My Struggle, My Triumph: What They Are and What They Are Not

I had lunch with a friend, also a wheelchair user, over the weekend.  Our discussion was wide-ranging, and spanned a number of hours, and somehow, amidst to the acknowledgment of the crazy roads that we’d traveled, the uncertain mortality faced by all human beings but perhaps more present to those of us who are medically different, and our goals for our lives, both in the moment and in the long term, we came to the question of inspiration. I don’t know anyone with a disability who doesn’t feel some hostility toward the concept that we call inspiration porn.  You’ve all seen it, the stories with tear jerking quotes by brightly smiling families, the halo almost visible as an author or journalist floors us with their epic tale.  Oh the struggle.  That they even get up in the morning.  We should be so strong.  Gag.

Most of us get up in the morning because the alternative is to stay in bed and vegetate.  Those of us that have been able to build lives are the lucky ones, precisely because it means that we get to truly live.

I may not love that I have to get up at 5:30 AM every day to wrestle with a recalcitrant digestive tract just to be able to start my work day at 930 or 10 like everybody else, but at least I can, and it has allowed me to build a profession.  It is frustrating to have to rely on other people for my basic needs, but at least I have those people, and the funds to pay them.  Don’t canonize me, rather shake your head as you realize that I am one of the lucky ones.

Still, as my friend pointed out, those of us that do it may, in fact, have some duty to inspire.  Not to inspire in the way of these flashy tales of triumph.  Not to inspire by setting our tragic nobility against the symbol humdrum problems of the average reader.  (And who are we to know what the average reader is experiencing behind closed doors?)  But to inspire by stretching the idea of the possible.  This would be an achievement of a life well lived.

I am a person with a severe disability.  I use a wheelchair, and I need the help of other people to dress and to shower, to get in and out of bed, to use the toilet, and prepare and obtain food.  Yet, I am a lawyer, and a former federal official.  I have worked for a Fortune 500 company and an AmLaw 100 law firm.  I am currently following the early 21st century version of the American dream, as I balance a search for traditional legal positions with the idea of starting on my own business.

Similarly, my friend has even more physical limitations than I do, and yet he has had a successful law career and is now seeking a Masters of Public Administration from Harvard’s John F. Kennedy School of Government.  I would love for the take away from our experiences is to be an expansion of the idea of what particular disabilities allow.

It is folly, and offensive to both compared parties, to say “Matan did X with his disabilities, therefore you should too.”  We each have our own abilities, and my accomplishments, or those of my friends, should never be used to set expectations, or worse to shame someone in an apparently comparable or seemingly easier circumstance.

But, there is a middle ground.  To see what I or my friend has accomplished is hopefully to realize that disabilities are not per se disqualifications from these accomplishments.  I am second by the idea of my life being used to tell someone else what they should be doing, but I love the idea that it might expand their view of their options.

Caught up in this is an acknowledgment of the struggle.  People should know that it is often more difficult to accomplish the same things with a disability.  I candidly share the length of my routines, the fact that everything I do requires the coordination of the schedules of multiple people, and, that though I am very much in charge of my own life, my choices are restricted by the needs of my body and the realities of hiring people on a schedule to meet those needs.

I can’t sleep late without extensive planning because someone is hired to get me up at a specific time, and I can vary their job on a whim.  Staying up beyond a certain time is a major planning exercise, as my assistants have shifts that end, and even if I can pay them stay longer, are dependent on public transportation, or their own need to get up in the morning.  We won’t even talk about how many things in life just hurt.  I know very few people with disabilities for whom a certain amount of extra pain is not simply a daily reality.

Why is it important that this be known?  Several reasons.  First, there is the very human need to know that these experiences are shared.  Even as another person with a disability looks at my accomplishments as a guide to the possible, they should hear of my difficulties to know that, when they experience something similar, they are not alone.

There is another reason, however, that this is important.  I learned a very valuable lesson from my first boss.  He told me that I should always treat difficult people in meetings with patience and respect.  Not only is it the only way to get anything done, but I have no idea what else that happened in their day before they got this meeting that is expressing itself in their behavior.  Inherent in this is the notion of coloring all of our interactions with an acknowledgment of the life experience of our fellows.

When it comes to people similar to ourselves, we do this imperfectly, but at least we have a basis for comparison.  When it comes to people with a significantly different life experience, like people with disabilities for those without, I humbly submit that we lack even a starting point.  I need to share some of my struggle with you, not for your sympathy, but because otherwise you have no idea from where I’m coming.

A request to never have a meeting before 10 o’clock sounds awfully strange until you know about my four-hour morning routine.  A request to preplan evening ending times only makes sense once you realize that I need to coordinate the schedules of the folks who will meet my needs and put me to bed.

So then, here is what I offer of my struggles and accomplishments.  See my accomplishments, not to canonize me but to expand your view of the possible.  See my struggles, not to drown me in sympathy but to appreciate where I’m coming from.  Disability or no, we all seek to be seen for who and what we really are.

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Only the Best for Our Children: Sometimes the Best Care Is Finding Someone Else

I have never met a parent who did not hope to predecease their children. A gentle decline and death at a ripe old age is the natural end of a life well lived.  Like everything else, this natural progression takes on a different meaning in the context of disability.

Everyone, whether or not they have a recognized disability, begins life in the care of his or her parents.  For some, that care ends very early.  For others, especially those with disabilities, it often persists.  I am 32.  My parents are 65.  16 years after moving out on my own, my parents still play an ever dwindling role in my support system.  It is small enough that, though I pray to God that they live many more decades, my lifestyle would not be significantly impacted should they pass.

This was by conscious design on both of our parts.  Before I reached the double-digits, I spent time at summer camp with hired care.  In high school, as my size and ever more complicated schedule made it more and more difficult for my mother to provide substantially all of my day-to-day care, we were hiring what limited help we could afford, and I was learning to direct them.

When I departed for college, and had access to steady state funding for personal care for the first time, we hired professionals and never looked back.  Sure, there were years of lessons to be learned in proper hiring and supervision.  Sure, especially in college, my mother was 90 minutes away in an emergency.  Sure, to this day, were I in serious need, she would be on the highway, were she not beat to the punch by my sister, brother, or law school best friend, all of whom live closer.

Still, my parents and I understood at an early age that my care needed to be professionalized, that no one or two people, no matter how loving, could be the foundation of my support, not only because they had lives to lead and jobs to do, but because, by the Grace of God, I should live many years beyond them, and certainly beyond the now bygone days when they could be physically responsible for a substantial portion of my care.  I lost a little TLC in professionalized care, but I have gained the ability to always see to my own needs.

I was troubled, therefore, when I read this article about parents caring for their 16-year-old son.  The article describes two incredibly devoted parents caring for their son with a disability.

In the article, the parents freely acknowledge that they worry about who will care for their son when they are gone.  They question whether he will be able to advocate for himself, and they pray for the strength to keep on giving.  This is touching, and upon first read I was overcome with affection for this family.

Yet, upon reflection, this concerned me.  We learn from the article that the State pays for at least some of the young man’s care, and that this money is paid to the mother.

Now, don’t get me wrong.  I fully support the structure of State programs that allow family members that provide care to be compensated for the opportunity cost of the ability to work outside the home.  In the life cycles of families, this can be critical.

That said, were I counseling this family, I would suggest they take some of these funds and begin to figure out to what degree this young man can self direct professional care, train him to the utmost of his abilities, and find strategies to compensate for those things he can’t do.  Like my family, I would love to see them develop a model that works while the parents are still fully able to provide the care during the growing pains.

As these parents prepare for their golden years, let them live their own natural physical changes secure that the well-being of their son is not dependent on the strength of their backs.  When they reach the end of their journeys, let their son be able to celebrate their lives and process his loss without needing to simultaneously worry about whether his basic needs will be met.

Every parent knows that one day they will be no longer able to care for their children.  Many children can become self-sufficient, some will always need external help.  Either way, critical part of raising a child with a disability is to figure out strategies to ultimately write yourself out of the support system.

In cases like mine, and the parents in the story, where the individual receives state resources, it’s about finding ways to use those resources so that any one person is not indispensable.  For those who have no means for anything other than family care, the obligation falls upon society.  We owe it to these families to give them the resources to see that as their children grow up into adults, they are provided with ways that their needs will be met even once their parents can no longer provide.

The parents in the story are right to worry, and it certainly never hurts to pray, but I strongly recommend that everyone take action on those worries while there is still something that can be done.

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It Starts in the Mirror: What I Learned about Seeing My Own Beauty from Two State Pageant Winners and a Comedian

Ariella Barker, Ms. Wheelchair North Carolina 2014, is beautiful. I don’t mean beautiful for woman in a wheelchair, or beautiful for one in my social circles, I mean beautiful, full stop. I mean beautiful enough that she remained a topic of comment by my able-bodied friend long after we met her, at a bus stop, while standing in the rain, with his admittedly attractive girlfriend, in 2008. Am I painting a picture? Not surprisingly, people notice this. Yet, as she chronicles in an intriguing blog posted yesterday by the Ruderman Family Foundation, people whom she encounters on the street find the concept of a beautiful woman in a wheelchair so confusing that they ask her if anyone ever told her of her beauty before. Clearly, the idea is so foreign, so alien, that they’re convinced that they have encountered a major discovery, a mystery of which even Ms. Barker must be unaware, and which must certainly have escaped the rest of the world. After explaining this, she writes:

Society needs to see the truth about disability. And, that is: We are beautiful. We are intelligent and educated. We are successful. We are sarcastic and funny. We are fashionistas. We are sexual and desirable. We are not a burden. We are an asset. We may use a wheelchair or have differently shaped bodies, but we are no different than the able-bodied.

She is absolutely right, and  I wrote on a related topic a few weeks ago, but I think that changing perception requires changing multiple narratives.

A few weeks ago, I encountered another blog post, this one from Ms. Wheelchair Florida 2014, Stephanie Woodward, whom I have never met, but who also appears quite striking from publicly available photographs. Ms. Woodward writes of the experience of growing up as a woman in a wheelchair:

So by the time you’re 12 and you’re reading Seventeen magazine where you’re learning that you need to start straightening your hair or no boy will ever find you attractive and you need to stay skinny if you ever want to be loved, you’re also hearing from every well-intentioned stranger that you’re broken and you need to be healed. There is something wrong with you and you need to be fixed. But you know you won’t ever be “fixed.” You’re walking like this (and eventually rolling like this) for life. You were okay with your life until the world started telling you that on top of being a completely imperfect tween like every other girl, you’re also broken - thus making you completely undesirable. …

This is what you grow up with. This is what you hear every day. This is why you pray that someday maybe someone will find you attractive. This is why you hope so f****** hard that someone will love you someday. And this is why when someone finally does show interest, you stay. You stay even though they beat the hell out of you. Because they said they love you when the rest of the world told you that you weren’t worthy of love. You stay even though they force you to do things sexually that you don’t want to do. Because, hell, at least they think of you in a sexual way. You stay when they threaten to kill you. Because you know you’re a burden and that being with a disabled woman is probably very stressful.

This young woman, literally a beauty queen, was so socialized to find herself unattractive that, for a time, she not only accepted horrible treatment, but had sympathy for her abuser, who was willing to put up with the “stress” of being with a woman with a disability. Ms. Woodward’s post reminds us both of the incredibly destructive expectations that society puts on women, and the particularly destructive self-image visited upon people with disabilities.

Given that feeling attractive is often considered necessary to present as attractive, it’s hard to envision addressing the problem identified by Ms. Barker without finding a solution to the one identified by Ms. Woodward.

I find the most hope for dealing with this problem in the words of British comedian Francesca Martinez. In a Guardian piece excerpting her book, What The **** Is Normal? by Francesca Martinez, Ms. Martinez recounts a romantic interaction with a fellow student in a comedy class, at a bar after one of her first class performances. Excerpted here, the dialogue begins with the man saying:

"I love the way your body shakes onstage. It's electric."

"Well, I hate the way it does that! It happens when I'm nervous."

"You shouldn't hate it. It's you and it's beautiful and different and musical."

"But people think I'm different."

"The only opinion of you that matters is yours."

This hit me hard. For the first time, I hated myself for hating myself.

He spoke once more. "You are Francesca. Full stop."

When I read this, I could empathize. Though Ms. Woodward’s piece points to the widespread nature of these damaging self perceptions, I have an easier time identifying with this comedian then with the two other writers, because, my generally symmetrical features and dark coloring notwithstanding, I have no doubt that I lack the looks to win a beauty competition. Like Ms. Martinez, however, I have been in relationships with people who assure me that my somewhat twisted and often shaking body is beautiful to them. And, like Ms. Martinez, I “hated myself for hating myself.” Or, if not hating myself, at least being certain that they were delusional in their opinions.

So what do I take from this? From Ms. Barker, we get a stark outline of a problem. From Ms. Woodward, we learn that it is a reciprocal problem, socialized deep in, even for the most attractive among us. And from Ms. Martinez, we find the first step in moving forward. Implied in her story is that she had to come to recognize her own beauty, and stop hating her body and its unique expressions, in order to accept that someone else might. It is hard to be desired until you can accept yourself as desirable.

I don’t know how this is achieved. I know that the Internet is filled with posts like this, trying to send positive body messages to young women. I don’t know if they work, and I certainly haven’t seen equivalent resources for men and women with disabilities, but it bears thought.

More basically though, I implore people to change their messages.

Ms. Barker and Ms. Woodward have literally won awards for their beauty, and yet, to read their posts, most often they receive backhanded complements at best. As a man, and one lacking negative features to which the able-bodied world reacts, I often hear very little about my appearance. despite this, even I also start from a basically negative self-image, physically speaking. I can’t really imagine the messages delivered a teenage woman with a disability that makes her look visibly different than our societal standard. I can imagine they must be pretty bad.

But Ms. Martinez’s experience, and my own, show how much difference a heartfelt positive assessment can give. In fact, I am willing to bet that, in our image conscious society, everyone, disabled or no, benefits from an unqualified acknowledgment of their beauty.

So I have a crazy idea. Why don’t we complement people more? Work on your delivery, to avoid coming off like a creepy objectifying stalker. Make sure that you have a relationship where it is appropriate. (It is probably not appropriate to comment on the features of professional colleagues or strangers.) But, beyond that, try telling people.

The Internet can tell me to love myself, and my mother will always tell me that I’m a handsome man, but as Ms. Martinez tells us, there is no real substitute for the experience of an attractive peer delivering us the message, unqualified and simple, “you are beautiful.”

Hear it enough, and you might start to believe it. Believe it, and you might start to act like it. And when you act like it, others will notice. Only then can we begin to solve the larger question of societal perception, one person at a time.

Like Ms. Barker’s message? You can donate to her trip to the national pageant by clicking here.

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A Lesson from Greenpeace in My Kind of Activism

*Disclaimer: I do not intend by this post to endorse violent actions or destruction of property, whether by Greenpeace or any other organization.* I have never chained myself to anything.

I can count the number of protests that I’ve attended in my life on one hand. I simply lack the attention span and the mindset to be a good demonstrator.

I’ve often felt bad about this. I know that without the brave men and women of ADAPT chaining themselves to buses, without demonstrations in DC and in state capitals, and without heroic actions like the historic occupation of the then Department of Health education and welfare building in San Francisco and similar protests in 1977 which led to the issuing of the first 504 Regulations, I would not have basic civil rights today.

I have been privileged, however, to have some opportunity to be a part of positive change. In my undergraduate days, I was privileged to work with my university as they completely revamped their approach to disability. I have been privileged to work with my employers, small and large, to help them to address disability issues. Especially meaningful to me, I have been honored with opportunities to work in disability public policy, first as an intern lobbyist, then as a municipal intern, then as a city political appointee, and most recently as a Presidential appointee.

Nonetheless, I have gone around with the sense of inferiority. I was gratified, therefore, to read a recent article in the Guardian about the newly appointed head of Greenpeace USA.  Says Annie Leonard,

“You don't have to sleep in the park. You don't have to chain yourself to something.” The organisation had to be receptive                  to all forms of activism, she said. “There has been a bit of a hierarchy of the people who chain themselves to the fence or go                on the big TV talk shows are somehow of higher stature and are more important than the people who make sandwiches. But                making sandwiches for the protesters is really important too. We have to figure out a way for them to plug in too.”

Her final quote in the article ties these statements to a call to action. In her closing prescription, Leonard says, “Building a movement really does require all kinds of people, so it is our job to make this work accessible and relevant to all kinds of people.”

Now, I will not accuse the disability rights movement of having the same preoccupation that Ms. Leonard attributes to the environmental movement, because I simply don’t have the perspective to judge the movement. I will say that I was guilty of this type of thinking, and used it to judge myself most harshly. I choose to learn from Ms. Leonard, to be receptive to all forms of activism, and realize that I can do the part of the work that is accessible and relevant to me.

For prescriptions, I will say only this. If you are like me, and not particularly suited for protesting, for chaining, or for demonstrating, give yourself a little break. Rather than chastising yourself for the aptitudes that you don’t have, or worse, using them as an excuse to do nothing at all, let us be guided by Ms. Leonard’s wisdom, and find our own role doing something that is “really important too.”

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Common Ground: Can Disability Provide an Angle to Move beyond Partisanship?

I was fairly politically unformed when I worked as a policy intern for United Cerebral Palsy in Washington, but if you asked me, I’m sure I would have told you I was a Democrat. I’m pretty sure that both of my mentors were Republicans, since one of them had worked in the first Bush White House, and the other had a lobbying resume that one does not associate with the liberal agenda, but I honestly didn’t know, because we were avowedly nonpartisan. Disability, we said, was not a partisan issue. Certainly, the heroes of the ADA include liberal icons like Coelho and Harkin, but also conservative stalwarts like Dole and Hatch. The law was triumphantly signed by a supportive George HW Bush, and aggressively implemented by Bill Clinton. Many like to think that this is because it is a cause so universally good or right that it transcends ideological bounds.

While certainly human sentiment played a role, I think that this is terribly simplistic. Very few people view themselves, or their positions as wrong, or evil. Rather, in the face of conflicting values, people choose based on the ideologies that are most important to them.

For instance, notwithstanding Mitt Romney’s taste for his own foot, I really doubt that he has anything against the idea of helping people in need. he is simply viscerally opposed to that help being provided in the form of government payments. He thinks that not good for society. I disagree, but this post is not about welfare.

So, then, perhaps the unity around the ADA was really a function of the fact that there was agreement upon both the goal, establishing legal equality as a foundation for economic and social equality for people with disabilities, and the means, enacting a broad antidiscrimination law. With neither side objecting to the other’s goal or means, cooperation was not only possible but desirable.

A recent column by Dana Milbank in the Washington Post noted that Ralph Nader and Grover Norquist had found common ground over the minimum wage. Writes Milbank:

Democrats have made the argument that an increase is morally right and that the only thing standing in the way is corporate greed. That may be so, but it hasn’t won them enough Republican support to get the increase through Congress. But what if Democrats were to make a free-market argument that a higher minimum wage would shrink the federal government and reduce the welfare state?

That’s the argument Ron Unz made to Nader’s gathering.

The government spends over $250 billion a year in social welfare programs aimed at the working poor,” he said, addressing the group via Skype. “If we simply made the working poor much less poor by raising their wages to a much more reasonable level, a lot of that money would be saved, probably in the range of $40 to $50 billion a year.” The $250 billion spent on welfare for the working poor, Unz said, amounts to a “massive subsidy for businesses” that are paying less than a living wage and “forcing taxpayers to make up the difference.”

Call me a cynical centrist, but I could paraphrase this long quote by saying, “Liberals ’ argument that this made them feel good was minimally successful at winning over economic conservatives. Once they were able to demonstrate that the apparent feel-good measure was also likely to be economically successful in raising the target population out of poverty, economic conservatives began to get on board.”

Now, I’m no fan of ideologues on either side, and God knows that there are plenty of folks in Washington today who vote ideology regardless of what makes sense, as was sadly demonstrated in the knee-jerk ideological vote against the ratification of the Convention on Rights of Persons with Disabilities (CRPD) in the United States Senate, despite the fact that it was patterned after the ADA, and supported by Senator Dole and the first President Bush. Further, I am liberal, and fundamentally disagree with the conservative positions on issues ranging from gun control to a woman’s right to choose.

That said, I think policy advocates in general, and disability advocates in specific, could use to do work finding common ground among individuals who disagree based not on ideology, but on a differing conclusion as to what makes good policy. Here, political deal making is not so much holding your nose to appease your opponent as addressing your opponent’s valid concerns. This passed the ADA, and, if we are to believe Dana Milbank, Ralph Nader, and Grover Norquist, could create a coalition around the minimum wage. Surely this will not appeal to true libertarians, and will be insufficient to appease true socialists, but, being workable policy for the laudable goal of raising partners out of poverty might be a blueprint to get something done.

Disability advocates should be looking for these points of commonality. As I point out in my Chutes and Ladders post, sliding scale premium, uncapped non-asset tested Medicaid buy-ins for working personal care users with disabilities is such an area. It promotes employment in independence while ultimately lowering costs of government benefits and raising quality of life for people with disabilities. The baseline for universal support among practical minded politicians is that the end is good in the numbers make sense.

We are always going to have areas of ideology where we disagree. My challenge to any advocate reading this is to begin building coalitions by helping reasonable people focus on the items that just make sense. As we come upon 24 years of the ADA, we have living proof of just what that can accomplish.

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My Eser Experience, a Meditation on Community and Its Power to Make a House a Home

This is just a stub to point you to a guest blog post that I wrote for Eser, an in-home informal Jewish learning project run by Hebrew college and sponsored by Combined Jewish Philanthropies. I hosted the downtown Boston group in my home this past Spring, and it showed me how, when strangers become friends, the awkwardness of difference fades away and new places gain treasured memories. Read the full post here.

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Help Us by Helping Yourselves: The Massive ROI in People with Disabilities

Don't underestimate the economic power of the disability community. I understand what Tim Cook of Apple meant in February when, speaking at a shareholder meeting, he said, “When we work on making our devices accessible by the blind, I don’t consider the bloody ROI.”

He was responding to a question about the cost of "green" efforts, posed by shareholders that felt that the company was spending too much on environmental sustainability, and he was trying to distinguish Apple as a company that would be first concerned with doing the right thing and second concerned with stock value.

This post will not debate the question, best left to economists, of the reputational value of being known as a moral company, and the indirect effect of that reputation on stock value. I think that it is there, and should be discussed, just not by me. Rather, I wish to take issue with his example.

As a rule of thumb, we say that one in five Americans has a disability. That’s somewhere in the neighborhood of 60 million people. Excuse me, I meant to say 60 million consumers.

What’s more, not only are we 60 million and growing all the time, for pure practicality we need to seek out for products and services that meet our needs. We may not be the richest demographic, but we still need to buy things, and they need to be the things that will work best for us.

This means, unsurprisingly, that blind people will seek out devices, goods and services that work well for blind people, the mobility impaired will seek out those that work well with their mobility impairments, deaf people will seek out those optimized for deaf people, etc. Further, we tend to crowd source in finding products that work for our particular needs. This means that being first to market in product advances that revolutionize the experience for people with disabilities will grab a wide swathe of us, millions of consumers.

Once you’ve got us, there is a inertia against change. Just like with any other consumer, a competitor needs to make a substantial advance in quality or price in order to get us to switch. We know that there are people using Apple products today for no better reason than that they had iPhones and iPads when Android devices were primitive, clunky, or just hadn’t been invented yet. Regardless of demographic, the first to market gets a head start.

Obviously, I would love to see every manufacturer of every product designing their products to meet the needs of people with disabilities, but I have no problem with economic rewards going to those who act first. I’m counting on it. It's the main incentive to act

I’m sure that companies do things because they are right. Companies, after all, are filled with human beings, and we like doing nice things.

I’d rather, however, count on a company doing something because it’s smart business. Once in a while, a company might take the high road. If you show them the profitable road, they will take it almost every time, especially if it happens to be perceived as right. When it comes to serving customers with disabilities, the economic opportunity for the first to market is immense.

So, I respect the values that Mr. Cook was expressing, but I have a message for him: Mr. Cook, when you work on making your devices accessible by the blind, please do consider the bloody ROI. Then, let that incentivize you to do even more.

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Ask and Ye Might Receive: Getting What You Need with a Disability Starts With How You Ask

I have a significant physical disability. I use a large wheelchair, one of my hands lacks almost any practical function and the other hovers around 70%. Not only do I require hired help for all of my activities of daily living in the morning and in the evening, I require enumerable little things all throughout the day. Despite this, I live very independently, not only navigating personal and professional worlds in Cincinnati, New York, and Boston independently, but also regularly traveling independently to Washington DC, with periodic travel to plenty of other someone random locations. Occasionally, people, especially other people with disabilities, will ask how I arrange the extensive concessions that this lifestyle requires me to ask of others, especially the service professionals that I encounter every day. I honestly think that the answer is in a carefully crafted attitude.

In my experience, nobody with a disability actually believes, “ask and ye shall receive”. We generally assume that the world is going to be difficult. We generally assume that we’re going to have to fight. There is truth to this, and nobody succeeds with a disability without a certain willingness to fight. But, as I say in the headline, I have found that the trick is “ask and ye might receive.”

I did not live to the 1970s, and I was very young in the 80s. I have no recollection of a world in which people with disabilities were truly outside of the consciousness of the rest of the population.

Certainly, I face discrimination every day, big and small. Whether it’s a difficulty in finding an accessible entrance, a store or restaurant with a grandfathered exception that is still closed to me, or that party where the host decided the venue must absolutely be a third floor walk-up, there are things from which I am excluded.

Also, there are people who don’t wish to serve me. The sales clerks in New York who visibly wish that I would go to a different store, the barber in Cambridge who simply announces that my barber is out today and so I should come back, saying without saying that he will not cut my hair, and the x-ray tech in Philadelphia who still can’t quite understand why I have no one with to remove my clothes and put me on the x-ray table.

That said, there are also the 3 different barbershops where the barber begins moving the chair to make room for me as I come through the door before I ever have a chance to ask, and the one on the Upper West Side where the barber runs to the store adjacent to his shop to borrow the ramp so that I can get inside. There are sales clerks and managers in every city who will walk with me through T.J. Maxx in order to help me access things on the shelves, even searching through the shirt bin with me for my obscure shirt size. And, there is the most recent x-ray tech I encountered, in Boston, who not only helped me on the table, but made sure that my clothes were 100% presentable when it was time for me to leave.

I do not pick these examples to indicate that the world has become easy. Neither do I pick them to lionize the individuals that helped me out, though I am grateful for what they did. Rather, I pick them to show that attitudes are changing, and that people with disabilities and our service needs are permeating the general consciousness.

One cannot always depend on getting a helpful the service person, whether one has a disability or not. That said, if you do not have a disability and you are in a restaurant, you expect accommodation from the server when you ask that your burger be cooked medium-well, or that they hold the onions, or put pickles on the side. Similarly, I do not assume that it is a special request when I ask that my food be cut up in the kitchen before being brought the table.

As a person without a disability, upon checking into a hotel, it is not unusual task for extra towels or a wake-up call, or even a rollaway bed. When traveling on business, it’s not even uncommon to ask the concierge to hold the delivery for your arrival. I do the same when it comes to the large number of extra washcloths my hygiene routine in hotels calls for, the fact that my bed will need to be on blocks or legs rather than a platform and, the fact that I will be pre-shipping a lift for delivery. When I make my reservation, I offer these requests with the assumption that they are perfectly normal. I hope that I am as courteous as we should all be to people in service professions, but I don’t imply that they are doing any favors.

This, then, is my answer to the question of how. Yes, some of it is that I have been blessed to encounter truly wonderful individuals. Moreover, through personal choice more than natural demeanor, I am very friendly. I recognize that service professions are difficult and unpleasant, that hotel and restaurant staff or mistreated and abused by superiors and patrons alike all day every day, and so I am nice. I am grateful. I take an interest in their lives, take a moment to smile, and to say a kind word, as I believe that everyone should do, with or without a disability. And, where appropriate to the type of service, I tip, because the failure to pay a living wage in this country is as widespread as it is indefensible.

I do not, however, presume that they are doing me a kindness by meeting my needs. They are doing their job, and I ask with the expectation that they will do that job. Generally they deliver. I neither demand with the implied threat of a lawsuit for discrimination, nor do I wheedle as though they are doing me some great favor beyond the call of duty.

The first, I have found, leads only to a defensive, if not outright combative response. The second, perhaps even worse, often predisposes the listener to feeling that they have encountered in imposition. After all, you prefaced it as such. Once they feel imposed upon, they are looking to find reasons to decline, and you gave them the opening to make that decision by implying that you were asking for a favor above and beyond.

This, then, is my learned and lived experience, which I hope might be useful. If you are person with a disability going through the world, and you have a need, ask for it politely but firmly. Assume that it will be granted. If it is declined, neither beg nor threaten, but, do as the most successful negotiators without disabilities do and asked to speak with the supervisor. But, mostly, ask with the assumption that there will not be a problem. I can’t guarantee success, but it will be better if one adopts the attitude, “Ask and ye might receive.”

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Questions Don’t Hurt: Ask Me Anything

“Questions don’t hurt, ignorance does.” I just heard this powerful one-liner on an episode of “The Facts of Life”, to which one of my Facebook friends posted a link. This episode, from around 1980, claims to be the first sit-com episode featuring a character with Cerebral Palsy. The character is very interesting, a comedian and a relative of one of the series regulators. She delivers somewhat dated one-liners about CP.

A little later on, when Tootie is posing a question, she struggles to find a word to refer to the CP. The actress, who actually has CP, says “you can say handicapped, it’s on all the parking signs”. The episode proceeds to tell a lovely story about jealousy and family, chock full of 1980s goodness. It is on these quotes, however, that I wish to focus.

“Questions don’t hurt, ignorance does.” How true.

It’s 34 years later, and yet there is still so much people don’t know. They see me, with my funny hands or my power wheelchair, and I’m certain that they have questions. I know it because it comes out in actions that reflect a lack of knowledge.

I love the children. I love that they will come and ask me anything. I’m frustrated by the parents who are flabbergasted by their children’s apparent imposition and don’t want me to answer.

I like nothing better than answering their questions. Children have questions about everything. Children have questions about what they see on TV. Children have questions about what they see on the street. Children have questions about their grandfather’s age spots.

Why shouldn’t children have questions about me?

I’m outside of their realm of experience. I am something new about which they can learn. I want them to learn so that they know, so that I become part of their worldview on what is normal, so that I become something within their experience when they have the deal with the other people with disabilities as they grow.

In fact, I wish adults would ask. I wish anyone who wishes to know something about me or my disability would simply ask. Don’t worry about the words, for whatever you call me, I’ve heard it. As the character said, when I was a kid, handicapped was on the parking signs. Further, as I have written before, I’m not terribly concerned about language, just intent.

“Questions don’t hurt, ignorance does.”

Certainly, understand people's boundaries. Try to pose questions to a friend, rather than a stranger. Try to make sure that your friend is willing to answer. (People with disabilities reading this post, I encourage you to think about how you could make it better for us all by being willing to answer.) Ask with respect, even if you don’t know precisely the right words.

Honestly, if you do not know who else to ask, [email](mailto:matansblogideas@gmail.com) and ask me. I hope that everyone asks questions. I hope that everyone seeks to learn the realities of disability. Because questions don’t hurt, but ignorance, that hurts us all.

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From Objects of Sympathy to Objects of Desire: Are We Finally Ready to Embrace the Sexuality of People with Disabilities?

In the world after “The Sessions,” it may finally have permeated the general consciousness that people with disabilities have sexual urges, and even that they act on them. Less clear is how well we acknowledge as a society that people with disabilities can also be the objects of sexual desire, experiencing and enjoying a relationship of mutual attraction, not only spiritual or mental, but physical. This week I was presented with two stories that provided interesting insights. One left me despairing and mildly ill, the other troubled my inner feminist a bit, but left the disability activist/sometimes sexual person with a disability in me cheering. I was truly troubled to find a story out of Minnesota this week about Jordan Knapek, a young man with CP going to prom. The author opens by telling us that we are about to hear “a story about how some of life’s best moments aren’t necessarily perfect.” The next 128 words proceed to focus on just how imperfect Jordan’s life is, focusing primarily on his limitations and his need for assistance. Then, we get to the heart of the story. In a tone reminiscent more of how one might talk about an eight-year-old then a 17-year-old high school senior, the author tells us, “Through his communication device, and in front of our camera, a secret got out. Jordan had been crushing on Rachel.”

Now, did Rachel return his romantic interest? Apparently not. Instead, the aspiring nurse said, “I just want him to have that high school prom experience.”

I will say nothing to impugn her motives. It sounds to me like a teenage girl with a big heart wanted to do something nice, and that really is sweet. It is hardly what I understand to be a high school prom experience, however.

My understanding is that usually when a guy asks a girl who does not fancy him to the prom, she usually turns him down, gently or not depending on the individual. Maybe he stays home and mopes, or maybe he bounces back, asks a girl where the interest is mutual, and has an actual high school prom experience. (I am taking no position on teenage sexuality, merely advocating that whatever prom experience two teenagers have, sexual or otherwise, should be genuine.)

Here, the article only tells us somewhat cryptically, “Jordan had to take in most of the night from afar, but his date did take him for a spin.”For Jordan, assuming that he aspires to real romantic relationships, I view this as a negative experience.

Finding real romance, especially for those of us that present to the world a little differently, is a challenge. In my experience, it requires some magical combination of awkwardness and fumbling along with confidence, assertiveness, and a real vulnerability and openness to rejection and heartbreak.

This experience began with a juvenile premise, the sharing of a “crush” with a third party, and ended with pure fantasy, the uninterested object of affection pretending to the bare minima of a date. This no more real than the high school girl who gives one dance to the first grader with a crush, but far less age-appropriate. I only pray for him that he gets to experience the real love of someone who is interested in him as a romantic partner at some point in his life.

This is not my biggest problem with this story, however. My biggest problem is that it typifies the image of people with disabilities as slightly infantile objects of inspiration, suitable for feel-good playacting, but not for real relationships, and certainly not as potential sexual partners.

Mere hours after I read this story, however, I came across a very different portrayal, one that gives me hope that maybe our journey as a society need not end with “The Sessions”, much less the story above.

I was killing time surfing the Washington Post during one of my physical routines, and I came across the news that the runner-up on the show Dancing with the Stars was a paralympian. Curious about this, I followed the link under her name and was brought to a very different story.

The story opens with a sizzling image:

“Purdy and Hough entwined themselves in more ways than you’d think possible throughout a steamy, ingeniously choreographed cha-cha on the season’s first episode. The twisting hips and tight, fast footwork posed no problem for Purdy, a competitive snowboarder.”

Not until two red hot paragraphs later do we read

 “she has abs of steel. Red-carpet looks. Sex appeal to burn, in a lithe body that’s perfect for the show’s skin-baring costumes. And those legs: Peeking out of her adorable gold-fringed cha-cha pants were gleaming metal rods leading to flesh-toned plastic feet, part Terminator, part department-store mannequin.”

Notwithstanding the cheesy imagery and the blatant objectification, which offended my inner aspiring writer and my inner feminist in equal measure, the first mention of disability comes at the end of a series of paragraphs practically dripping with sex appeal.

Now, this is not to ignore that the author follows the tired conventions of disability journalism, using inspiration porn expressions like “She has looked into the abyss, and clawed her way back.” Also, the very emphasis on the way that disability disappears creates a troubling link between sexual appeal and some idea of "normalcy" or passing, but, one societal problem at a time is enough for me.

Also, much of the midsection of the article is a fascinating look at the potentials of prosthetic design, not germane here.

She closes, however, with the following image.

“Tiptoing [sic] onto the stage for her contemporary-style dance with Hough, Purdy wore a simple silver dress with an airy chiffon skirt, the hem short enough to show her muscular thighs and sleek, jet-black shins, exposed metal ankle joints and rubbery Barbie-doll feet in a permanent point. . . . the emotional power lay in the way he and Purdy moved together, as if the dance floor were a private realm beyond reach of physics. And the final picture painted by the author captivates. She writes, “At one heart-catching moment, Purdy melted into his arms and he swept her around his back as if she were weightless. As if she were swimming through air.”

This paragraph describes beauty and power, eroticism and grace, and breathtaking chemistry, and does this not by ignoring the prostheses nor exalting them, but including them seamlessly in the captivating picture. The reader is captivated by the description this woman not because of her prostheses or in spite of them, but rather because of the whole picture of which they are a part. At the end of the article, Ms. Purdy says “I am not my legs.” This is true, but the beauty of this article is that it shows that the legs can be a part of, rather than apart from, the attractive whole.

Without question, this article, like *Dancing with the Stars* in general, is filled with the sort of cheap sexual theatrics of which I generally disapprove. At the same time, I am truly delighted to see the equality of opportunity in the way those theatrics are applied to a woman with a disability. If I have to choose between people with disabilities being portrayed as children, treated to romantic make-believe by their well-meaning peers, or being portrayed as the potential subject of sexual desire, I think the latter is infinitely preferable.

“The Sessions” taught us that people with disabilities seek meaningful sexual relationships. Maybe, just maybe, we are starting to acknowledge that these attractions can be reciprocal. One can hope.

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If You Can Manage to Care: Actually Caring is the Best Way to Save on Healthcare

There is great fear in the disability community today about the slow and inevitable transition from Medicaid fee-for-service to Medicaid managed care, and for good reason. For most, managed care conjures up pictures of bureaucracy and rationing, the erosion of choice in favor of the almighty dollar. The rise of the HMO was a horror story in the private sector that many of our most in need are just waiting to see replayed. Why then are people virtually beating down the doors to join the One Care Program, a managed care program at Commonwealth Care Alliance (CCA)? Why do I hear, and share, the lament that CCA's services are currently only available to those dually eligible for Medicare and Medicaid, because the capitated payment system on which they function is only available as part of a demonstration project for dually eligible beneficiaries. Why do I hear clamoring for a capitated option for Medicaid only beneficiaries?

The answer can be found in one phrase. “Managed care, not managed cost.” I first heard these words out of the mouth of Dr. Robert Master in the summer of 2003, when I sat with him as he pitched the idea of CCA to potential funders. His decades of demonstration work at what was then the Boston Community Medical Group had proven beyond a shadow of a doubt that caring for the whole person improves health and minimizes cost. Why is this?

Crisis control, hospital admission, emergency medicine, and end of life care make up the most expensive parts of any health care system. A nickel prevention here is worth many dollars of cure. Dr. Master and his team learned that if you get to know an individual, learn their needs, their wants, and how their individual bodies work, and if you choose to meet those needs, without regard to a prearranged menu of services, then health care works better and costs less. Routine maintenance, often nickel and dimed by private insurance or fee-for-service Medicare and Medicaid, can prevent crises and hospitalizations. Creative care strategies tailored to the patient can do even more. When the only barrier to paying for medical care is that the doctor and the patient agree on its necessity, amazing things happen. Then there is end of life.

Most of us in the private insurance world build strong relationships with our doctors as we age. Under their thoughtful care, we craft living wills and other end of life plans, we discuss our needs and designate loved ones with powers of attorney. We give careful thought to the balance between the natural extension of our lives and the needless prolonging of our suffering. Traditional government programs, with their impersonal bureaucracies and overtaxed professionals, often fail to participate in, let alone prompt, these discussions. Further, many with disabilities have not been exposed to the cultural norms that Ithose of us who are the educated children of educated professionals did. They have never drafted these plans, and, once a final illness takes the ability to speak for themselves, their doctor has no choice but to fight for the last agonizing breath, often taken long after conscious life has departed. The final service of truly caring managed care is to work with patients to discuss these important questions long before treatment decisions must be made. End of life becomes orderly, often much more pleasant, and, though we hate to admit it, much cheaper. This allows limited dollars to go for quality of life for the living.

In short, when care is truly managed, outcomes are better and cost is less. And you need not take the word of a health plan. Rather just ask the many Massachusetts Medicaid beneficiaries clamoring for CCA. This is a model that should be studied and replicated, a medical practice that is truly first and foremost about care.

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Meaningful Employment for People with Disabilities: Let's Start Making It Happen Now

Today, I have the honor of being the featured writer on Zeh Lezeh, a blog of the Ruderman Family Foundation. For those who do not know, the Ruderman Family Foundation is a fantastic organization based in Boston and in Israel. Their mission statement, in their own words, is that,

Guided by our Jewish values, we support effective programs, innovative partnerships and a dynamic approach to philanthropy in our core areas of interest: advocating for and advancing the inclusion of people with disabilities throughout the Jewish community; fostering a more nuanced understanding of the American Jewish community among Israeli leaders; and modeling the practice of strategic philanthropy worldwide.”

I can personally attest to their impact as I continue to find their philanthropy at the heart of a vast number of initiatives in the Jewish world designed to improve inclusion of people with disabilities.

Today’s honor reminded me of the first time I had the honor of being their featured writer, on January 2, 2012. I wrote a pitch entitled Full Employment for People with Disabilities: If Not Now, When? It is now two years later, and I feel that my call to action remains, unfortunately, as timely as ever. Therefore, I reproduce the following post here, and challenge my readers to think about how they could implement it.

Guest Blogger Matan Koch, Associate at Kramer Levin Naftalis and Frankel, LLP and Member of The National Council On Disability

The below represents the author’s personal views, and not those of the National Council on Disability.

In the Mishneh Torah, the Rambam teaches that, when dealing with tzedakah, or righteousness, “the greatest level, above which there is no other, is to strengthen the name of another Jew by . . . finding him a job in order to strengthen his hand until he needs [tzedakah] no longer.” Archaic language notwithstanding, this simple fundamental truth guides us today. Read properly it should inform and motivate efforts to employ people with disabilities, to lessen or to replace their dependence on lesser forms of tzedakah like Medicare, Medicaid, SSI and community supports, and set them up for long-term meaningful independence.

This is nothing new to most people, but the implications of such a focus might be. We read in Kohelet (Ecclesiastes) 11:1, “Send forth your bread upon the waters; for after many days you will find it.” The rabbis explain this directive to mean that we, the doers and givers of tzedakah, benefit.

American businesses are just beginning to understand the benefits of employing people with disabilities. They are learning that it provides access to a separate and often overlooked talent pool. For example, I am a Harvard Law school graduate. Harvard Law school graduates are in high demand, and it is for this reason that I represent an appealing recruit for many businesses. Those businesses will work hard to accommodate me in order to access that talent. These talents, both those that are evident on resumes and those which are only discovered throughout the course of work, present significant benefits to employers.

Businesses are also learning that hiring employees with disabilities may allow the employer to expand in or even dominate the consumer segment with disabilities. To build from the words of the Rambam, strengthening the name of our brethren with disabilities strengthens us and our businesses. As we seek to emulate this highest form of tzedakah, we build independence, but also stand to reap tremendous benefits. That is a win-win, so, I ask “If not now, when?”

But, even if we agree that this is a win-win scenario, how do we get there?

We learn from Pirkei Avot that “Ben Azzai taught: Do not disdain any person. Do not underrate the importance of anything for there is no person who does not have his hour, and there is no thing without its place in the sun.” Simply, we each have our own special contribution to make to the critical work of tikkun olam. The same idea holds true for a business.

A successful employer would start by identifying needs within his or her organization, and continue by looking among jobseekers with disabilities to find outstanding candidates who could meet those needs. Conversely, people with disabilities seeking jobs need to focus on the skills and abilities that they bring to the table, just as would any other job seeker. Their path to employment involves education and perhaps vocational rehabilitation to hone and highlight these abilities, raising their appeal to employers.

A match made focusing upon the need of an employer and the abilities that the employee brings to bear is a recipe for success. Accommodations in this circumstance become a collective undertaking to best utilize the employees abilities to meet the need for which they were hired.

The law, always intended to be a floor rather than a ceiling for accommodation, drops away in importance as partners join together to find the employee his or her “place in the sun” so that both parties benefit. The employee benefits from the job at which he or she will succeed. The employer benefits from a well-matched worker who, trends show, is likely to stay with the organization longer than his or her able-bodied counterpart, and potentially provides help in accessing the market of people with disabilities. All because each party understood the place of the other.

Tradition teaches us what to do and how to do it, so I ask again, in the words of Rabbi Hillel, “If not now, when?”

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Elephants, Taboos, and Poster Children

As anyone reading regularly will know, I am currently engaged in a job search. Recently, a friend who was making some introductions regarding the search asked if it was okay to reference my disability. This touched off a well worn internal conflict. On the one hand, I thought about all of the times that I have experienced prejudice, and I wanted to say no. On the other hand, I thought about the motivators, from compassion to affirmative action, which might drive a contract to be more receptive, and I wanted to say yes.

The momentary conflict subsided. I remembered that my disability was so apparent, even from my resume, that avoiding it was nothing more than ignoring an elephant in the room, making something taboo when it did not need to be. But I could not stop thinking about the implications. Prejudice is a horrible thing, and I cannot blame anyone who, having the option of hiding their disability, chooses to do so. But what about the other side?

I was unquestionably a poster child. Yale used my face on their diversity newsletter when I was a student. I parlayed that into real face time, and used it to work with then President Richard Levin and his wonderful staff to make Yale a more inclusive place. Long before the photo, I concluded that, in light of my good but nor elite numbers, that my admission was in part due to the disability status. Though admited with soft high school numbers, I graduated from Yale cum laude with a 3.79 GPA. So, it seems that I got in in part because I have a disability, and we know that I was used for promotional purposes because of that disability, but I was also hugely academically successful, and was also able to partner with others to actually materially change opportunities for future Yalies with disabilities, something that I would not have been able to do if I were not both at Yale and openly a person with a disability.

What does this mean for my friend’s question? I do not want to be hired at a job at which I will not succeed, but I am a good lawyer, and reasonably confident that I will excell at any job for which I were to be hired. What then the harm if disability gets me through the door, other than that to say so is taboo?

Further, we are, as a society, fast approaching a tipping point in the way that the business world utilizes disability talent and reaches disability consumers. What if, just like at Yale, I have the opportunity to build from poster child status and in so doing gain the opportunity to bring my employer to the leading edge of these trends? This strikes me as a net positive, especially because, given i would also contibute as skilled lawyer in the legal position for which I was hired, it is all added value. Yet, in order to bring that value, I cannot reject being held up, but must rather embrace it. Again, it is easy for me since my large wheelchair makes disability the elephant in the room, ignored only by conscious choice. That said, it is not easy to overcome the taboos to embrace that role. So, sometimes I struggle.

I told my friend to use his judgment in the introductions, even as I will use my judgment should I be offered a job. I am curious, though, have others wrestled with this? Readers, those with disabilities and without, what do you think of embracing these taboos if the result can be real change, or even the less lofty but equally valuable goal of putting food on the table? I know that I will continue to wrestle with these questions each day, and I encourage you to consider them.

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Diverse Advantage, and Diverse Adversity: We All Have Privilege to Check

My name is Matan Koch. I am White, and as such belong to a racial group which had effectively, if temporarily, conquered the world by the early 20th century. In pursuit of Empire, the European powers traversed the world, concurring, exploiting and enslaving. Nearly ¾ of a century after World War II signified the beginning of the end of the colonial era, whole regions of the Globe are defining themselves in terms of how well they have managed to recapture their own culture and self-rule after European dominance. In my own country, my race holds a slim majority in population but a vast majority in opportunity and economic power. Our other races, one with a not too distant history of enslavement, all with a still unfolding history of discrimination and exploitation, still experience an incredible deficit of opportunity in terms of education and economic resources. This is in addition to outright discrimination, legal until 50 years ago, and prevalent today. My paternal grandfather, a White man, had a college degree, and worked for most of his life in White-collar careers, from business ownership to teaching. My paternal grandmother, a white woman to whom he was married from when they were each in their early 20s to his death at the age of 83, also took college courses, and worked professionally in careers ranging from music education to high school and collegiate audiovisual. My maternal grandfather was also white and also had a college degree and worked as an accountant for his entire professional life. I know less about my maternal grandmother, but she was white and, though, to the best of my knowledge, she had no education past high school, did secretarial work in office settings. They too were married from their 20s to her death in her 80s. My mother has a bachelor’s degree and graduate education, and worked for 35 years as a Jewish education professional, both teaching and running large religious schools. My father has a bachelor’s degree, a master’s degree, and a five-year professional degree, and has spent the last 35 years working as a congregational rabbi. Both of them had fairly stable home lives. So did I, and I grew up knowing that I was going to go to college, exposed to philosophy, literature, and art in the home where I grew up, while simultaneously learning everything from cultured grammar and diction to basic math and science.

My father helped me with college admission essays with greater skill than the average guidance counselor. I applied to Ivy League schools secure in the knowledge that I had all of the basic skills for which they were looking, most of which had been in my family for 3 or 4 generations. Today, I go into cultural events or job interviews with a look and sound that sociologists tell us even minority interviewers have been indoctrinated to associate with success. It is ridiculous not to acknowledge this massive source of privilege.

My name is Matan Koch. I have Cerebral Palsy. I use a wheelchair and personal care. My voice sounds a little different, and one of my hands is visibly contracted. In a country where my basic needs to survive are guaranteed only in poverty, the employment rate for individuals like me is a tiny fraction of the general public.

Until I was 10 years old, it was legal to discriminate against people like me in employment. I would be 12 before the law would mandate that places of public accommodation need to make themselves open to me, and grandfather clauses insure that, in many cases. they still do not. My ability to gain public education was only first legally proposed shortly before I was born, and is still often subject to litigation. I would still not be guaranteed accommodation in private school.

In many countries in the world, I am considered subhuman, a thing to be hidden, of no redeeming value as a family member, and certainly not as a professional. Short decades before my birth, states in my own country were forcibly sterilizing folks like me, and it was not until just before the turn of this century that the Supreme Court stated that I have a right to live in the community, rather than experiencing the warehousing in abysmal institutions that was the norm not long before and, sadly, has still been reported in this decade. Though an Ivy League graduate, I am regularly infantilized and presumed unable. When I roll into a job interview, there are times when, stellar resume notwithstanding, I know that it is over before it begins as people start hinting that I might be better and a job less demanding than whatever it is that they have in mind. I am the consistent object of systemic discrimination, and have it markedly better than many other Americans with disabilities.

My name is Matan Koch and for those unfamiliar with the name Matan, I am male. For thousands of years, my gender treated women as chattels, submissive property. Women got the franchise in living memory, and were legally vulnerable to sexual harassment on the job in my lifetime. The male bias in my culture is so pervasive that it is difficult to truly see.

I did not begin to understand that until a piece that I was given in high school English class made the point vividly. The author wrote a paragraph about a day in the life, but instead of defaulting to male terms for traditionally male professions and female terms for traditionally female professions, it defaulted to White for traditionally White dominated professions and Black for traditional minority professions. As a class, we viscerally reacted to reading about policewhites and sanitation blacks in a way that policeman and stewardess did not quite stand out. The generalization is frankly just as egregious, but we are still used to it that we do not see it.

My gender gets better jobs, gets paid more for the same job, and still dominates the senior positions in every industry. Basic biological realities experienced by my gender are normative and accounted for in employment, while rights around pregnancy and lactation still require a massive fight. My gender has boasted every single American President, and still dominates the clergy even in those religions where it does not have a monopoly. Sociologists tell me that my gender’s thought process is the norm of the business world, and that only now is corporate America beginning to stop telegraphing to women in business that they need to think more like men. I have an incredible advantage.

My name is Matan Koch. I am a Jew. The systematic slaughter of my people has persisted from Ancient Babylon to Nazi Germany. In many places around the world I am still hated and reviled, and would need to hide my religious identity. Even in this country, without a legal history of religious persecution, my people were subject to pervasive distrust and discrimination at least as recently as the childhood of my parents. I still face regular attempts at conversion, though, not, like my ancestors, at the point of a sword, and periodically, even in this country, some disaffected malcontent will do their darndest to go to kill a bunch of my people. The latest one, in Kansas, did not manage to kill any Jews while tragically killing three Christians, but, he was trying.

Corporate America and law firms had quotas and hiring restrictions on my religion well through the 1970s, and the voices on the radio routinely tell me this is a Christian country. If history is any judge, even the Jews of a society where they are doing well might eventually find themselves dispossessed, as were the well to do Jews of Spain in the late 15th century. I have known ethnic discrimination.

All 4 of these are true and accurate, to the best of my knowledge. They are integral parts of me. Unquestionably, my life would be harder were I a minority Jewish woman in a wheelchair, and easier if I were a nondisabled Christian White man. It seems to me that the flaw in the relatively myopic and immature Time magazine article that will not die, mentioned again in a discussion group in my house this week, is the failure to recognize that the same person can have both privileges to check and disadvantages to acknowledge.

If I am to have a meaningful discussion with a nondisabled African-American male, I need to check my White privilege, he needs to check his nondisabled privilege, and we should both be aware of the privilege that we have by being men. It is remarkably shortsighted to think that only those that have not faced disadvantage have privilege to check, and this appears to be the article’s biggest weakness. I strive to go through my life interactions cognizant of my privileges, even as I cannot escape my challenges, and I think no amount of adversity is sufficient to negate the value of that approach.

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Labor Protections for Personal Care: The Money Is Fuzzy, the Morals Are Clear

Since August 1998, when I was 16 years old, I have been dependent upon a unique class of professionals for all of my physical needs. These hard working men and women were integral to my earning two Ivy League degrees, my professional success, and really anything that I have achieved since leaving my parents’ home in 1998. On the East Coast we call them Personal Care Attendants, other regions refer to them as Personal Assistants. They, together with the slightly better trained Home Health Aides and Certified Nurse’s Aides, make up the incredible corps of giving, caring individuals that facilitate the lives of countless people with disabilities in order that they can live independently. It will surprise few who are familiar with the economic realities of this country that, demographically speaking, this population of workers tends to be only high school educated (if that) and disproportionately minority, immigrant and female. It may be more surprising that, currently, due to a companion care exemption in the regulations implementing the FLSA, these individuals are not provided with mandatory overtime in excess of 40 hours, let alone items like sick time. (Arguably, even the current exemption is over applied, but that is outside of the scope of my post.)

The Obama administration has proposed regulations to end this exception, and they take effect soon. This is causing great consternation in the disability and caregiving communities, and Jeff Rosen, the Chairman of the National Council on Disability, on which I served until recently, has written a letter asking Labor Secretary Tom Perez to delay the implementation. The purported purpose of this delay is to

“allow DOL [Department of Labor] and the Department of Health and Human Services (HHS) more time to work with States as well as the disability and aging communities to understand the policy and operational issues, develop workable solutions on key components, and determine an appropriate course of action.”

With due respect to Chairman Rosen, this is a naked delay disguised with bureaucratic obfuscation. I was one of the moderators of the January 2013 meeting referenced in the letter, and the policy and operational issues could not be clearer.

As I said in the introductory paragraph, we who use these services are deeply aware of the value of the loyal service of these dedicated individuals. None of us want to see them get anything less than the very best, and not a single voice argued that they deserved anything less than that which is promised to other American workers.

Rather, there is a reality that no one wants to talk about. The vast majority of Americans, myself included, receive these services through government programs, the most common of which being Medicaid. Practically speaking, current state Medicaid budgets could not cover time and a half for these workers, and the likelihood of these budgets being changed simply because the Department of Labor changes the regulations is nonexistent. So what would happen?

Every current care attendant, personal assistant, or home health aide would be cut safely below 40 hours per week. I know this argument is often used to attempt to invalidate the goals and protections of the FLSA, but ask the reader to recognize that the incentives are entirely different when the person making the payment decision is completely distinct from the person benefiting from the labor. If a factory owner wants to split shifts to avoid paying overtime, that owner bears the cost of the labor inefficiency of multiple workers in the same job. The choice, whether to pay more or hire more, is a simple economic calculation, made by the decision maker. In this instance, neither the worker nor the beneficiary of the labor is making the decisions. To the budget official making Medicaid decisions, quality and continuity of care is only the most abstract consideration.

Here, essentially, everyone loses. The person with a disability loses because rather than have appropriately designed shifts balancing the needs of worker and consumer for maximum efficiency for both, they must arbitrarily break at the 40 hour line. Further, as the expression goes, good help is hard to find. To remain under 40 hours per week, the consumer may need to hire more people, and face the difficulty of fielding a larger team of staff with good skills and good fit. The person who loses most of all is the worker. There is no question that the worker would be better off working 60 hours where 20 are at time and a half than working 60 hours at time, but the real distinction is 60 hours at time versus 40.

What, then, to do? Most disability advocates are pushing strongly for the status quo, and I agree that the status quo would be better than the scenario that I outlined above. But what about real courage? What about saying to the Department of Labor and to the States “we support the proposed rule, Mr. Secretary, but we demand that part of self-determination is to free up the funds to authorize overtime as we see fit.” This would be a courageous option, protecting the rights of our caregivers while ensuring the needs of our consumers are met.

To my former colleagues, I say this. The answer is not difficult. Frankly, I have outlined our choices in two paragraphs. The hard part is gathering the conviction to push for the right decision, because this letter feels like merely trying to delay it.

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There Is No Try: My Mini-Revolution When I Stopped Trying to Change the World

Any post that combines a reference to Star Wars with a reference to the Beatles is probably trying too hard, which is ironic since my goal is to write about refocusing my sights more realistically. A friend shared an article on Facebook the other day about a Yale graduate who has found success on a children’s television show. I will not link the article here, because it is not particularly germane, but something that he said stuck with me. He said that he nearly declined the role because, though unemployed, as a classically trained Shakespearean actor, and a Yale graduate no less, it seemed insufficiently serious. Rightly or not, this got me to thinking about my own life, and how I am finding new opportunities for change by looking a little smaller.

As a teenager, I wanted to save the world. I remember going to Rabbi Jim Ponet, the Howard M Holtzman Jewish Chaplain at Yale, to ask about the likelihood of raising $2 million from wealthy Jewish alumni to meet my disability costs over a lifetime of public good. I was 17. Jim, God bless him, did not laugh outright, but did suggest to me that I probably needed a few more accomplishments before I could go to someone asking for that kind of investment. I went to law school, still looking for the role where I could change everything.

I got out of law school and found that there was no job where I could have the impact that I wanted and meet all of my financial needs. Nearly 10 years and one largely uneventful presidential appointment later, I found myself at another time of transition. Again, I began looking for the big job. I would be a nonprofit professional, or maybe start a disability consultancy to take advantage of my corporate expertise, and/or my policy expertise, in playing in including people with disabilities, while helping businesses to capture and corner the market. If those options did not work, then I was just going to search for private in-house roles. My focus was so big and so grandiose that it only really left room for all or nothing.

Nonprofit jobs were not really forthcoming, and neither for that matter was an in-house role. I found myself looking for freelance work, mostly to pay the bills. I found some, working with some wonderful nonprofits here in Boston. The income only meets a portion of my needs, but it is something. More importantly, in the few months that I have been freelancing, I have been able to contribute to 2 major advocacy pieces dealing with significant issues facing people with disabilities, I am taking the lead on a series of important recommendations on another policy issue, and I have been asked to begin to think about the structure for a program that could materially impact the lives of a disadvantaged population here in Boston. (Pardon the vagueness, none of these projects are actually public yet). None of them pay a fraction of what I am accustomed, or operate on the scope of my flights of fancy, but each will make a meaningful difference.

It is kind of amazing. Because I could not find the big opportunity, I am now faced with the opportunity to make more small, impactful contributions than ever before. I am still looking for in-house work because those bills need to be paid. I have started this blog because I realized that I could be incremental, rather than wait till I had a book to share with people. I have at least blocked out a concept website for my consulting practice, www.capitalizability.com, and I am ready if anyone wants to refer my first client. And, right now, and potentially even were I to take an in-house role, I am doing things that can make a difference.

Once I stopped looking for the grand opportunity consistent with the grandiose image that that 17-year-old apparently never quite left behind, and started taking the opportunities in front of my face, the myriad of little opportunities presented. And, who knows, maybe they will lead to the next one, and the one after that, until, once I have truly stopped looking or trying for it, I find my Revolution.

Does this resonate? I am certain that if you are the kind of person that reads my blog, then there is something about which you are passionate. I am also certain that you have heard all of the clichés about journeys and steps. No doubt you think yourself a grounded incrementalist, even as I did. And yet, how incremental are you? I challenge you to not pass up an opportunity to make a difference because you think it beneath you or too small. Rather, take it and be amazed at the sudden opportunity to make a difference. It took financial necessity to truly teach me this lesson, but maybe you can be a little smarter than me.

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Chutes and Ladders: Obstacles on the Journey to Employment For Personal Care Users

I do not actually remember the game Chutes and Ladders. I remember that there were chutes, and I remember that there were ladders, and I remember that there was some method of following a path based on a die roll to get to a finish line. It is entirely possible that both chutes and ladders were positive things, but for the purpose of this blog post, I am going to choose to remember that the ladders were a positive climb up, and the chutes a precarious pitfall that you hoped to overshoot with your die roll. The analogy works for me, so I am going with it. One day a few years ago, I got a call in my New York office from a woman who heard that I was a working professional while using significant amounts of personal care. She was distraught, for she had just been offered a good job, making in the vicinity of $80,000.

Why, you say, should she be distraught? This sounds like good news. Alas, she was an individual with a disability who received her almost $100,000 per year of annual care from New York Medicaid. Further, under New York eligibility rules, if she made more than about $60,000 per year, (this year's number is $59,388) she would lose her Medicaid. $80,000 was not enough to pay for care, let alone care plus living expenses. This Ladder had become a chute which would have made her unable to maintain her life. I did not have a solution at the time, save that my annual salary was $230,000, and that was how I paid out-of-pocket.

Around that time, I made a friend, a resident of New Jersey. He too, had a good job, and though not eligible for New Jersey’s Medicaid buy in, which had an even lower threshold than New York, as a former recipient of SSI meeting certain other conditions in New Jersey, he was eligible for Medicaid through a program under section 1619(b) of the Social Security Act. If you follow the link, you will see that this program allows individualized determinations of eligibility disregarding earned income for certain classes of people, including those dependent upon personal care. A little loophole though, is that, other than an exemption for earned income, he needed to meet all of the eligibility requirements for SSI, including making sure that his assets never exceeded $2000. This is not a typo. $2000, a threshold set in the 1980s and never changed. To receive his care, he could not save for retirement, or even create a decent contingency fund. These well-recognized ladders to financial success would have been chutes. His disability progressed, and he had to leave that job, and is now living primarily on fixed income. I wonder if that would have been the case if he had been able to save prudently, and invest.

I recently moved to Massachusetts, and did so precisely because they it is the only state I have been able to identify where eligibility for the personal care program is not precluded by income or assets. By happy accident, I applied for Medicaid while still officially making my law firm salary of $285,000 per year, so I have some interesting numbers. Massachusetts has a premium for people with disabilities above certain incomes that receive services. By way of example, had I been making $285,000 by the time I actually became eligible for Medicaid, I would have paid the monthly premium of $3650, but I would have had services.

Let us do some math. I submit that, in round numbers, my care will cost the State of Massachusetts $54,000 per year. Incidentally, I am by no means one of the most expensive recipients of care, but my own numbers are the easiest for me to access. I submit that there are few if any jobs that I could get in Massachusetts given my current realities (which still make me more employable than 99% of Americans) that would allow me to part with that much money out-of-pocket per year. As such, Massachusetts will be the guarantor of my care whether I am employed or not. This fact becomes even more immutable for others as care needs rise and income potential drops. Let us assume for a moment that if I were making $200,000 per year, my premium might drop to $3000 in Massachusetts. (I have made up this number, but it is not out of line with the numbers above.)

If I lived in New York, I would likely have to leave my $200,000 job because of difficulties paying for care and all other disability costs, even at 200,000. For instance, the rent on my accessible apartment with 24 hour building staff to limit my need for personal care was almost $3700 per month. If I lived somewhere cheaper, I would probably need more care to make up for lack of services. (Actually 200K might be just enough, but I am trying to work with round numbers.) Thus, New York would be on the hook for $54,000 a year of my care, plus likely subsidized housing, while the federal government would pay SSI or SSDI, and likely Supplemental Nutrition Assistance, all to allow me to live with an income of zero.

In Massachusetts, I would keep the job. I would pay $36,000 a year of my care, with Massachusetts picking up the other $18,000 plus assorted medical costs. Since I would be earning a good salary, I would pay my own rent, or mortgage since I could have assets, and I would not need to collect social security or nutrition assistance. Further, I would be paying taxes, so the net costs to the taxpayer would be even lower.

In this scenario, literally everybody wins. I win because I get the benefits of work, of Independence, and of disposable income, all while receiving the care that I need. In a period of decreased work, like the one I am currently experiencing, I would have savings to get me through. The taxpayers win because my ultimate price tag is probably less than a quarter of what it would be in another state, all while I am paying taxes, reducing the net impact. My employer wins because they get my labor and my talent. Society wins as we add to the population of productive adjusted members, decreasing dependence and poverty while increasing hope. By eliminating the chute, we all get to ride the ladder together.

Most states provide some kind of personal care, and those that do not provide institutional care, which is even more expensive and filled with other horrors and drawbacks that I will write about in another post. Only Massachusetts has set out this path to winning through work. I can literally see no justification for why it has not been adopted in every State save inertia, and ignorance of the financial realities. Unlike the need for more funding inherent in yesterday’s post regarding Personal Care, there is no state that would not save money, they just do not know.

So my reader, I share these facts with you. Share them widely. Share them with decision makers. Push for change. We will all benefit.

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Is the Person Really First? A Critique of Person First Language

I was born handicapped. Sometime in my early childhood I was briefly physically challenged and by middle school I was disabled. I am now a person with a disability. Similarly, I have progressed from wheelchair-bound, to in a wheelchair, to a chair user.

It may surprise you to find that the actual nature of my physical condition is unchanging, and that medically, my charts have said pretty much the same thing since 1981. Medical science generally only changes names if it signifies a greater change.

This is something that I think we have lost in the progression of language around disability. Ideally meant to focus on my personhood, the phrase “person with a disability” really only serves to tell me that I am dealing with someone who is both educated, and hip to the latest lingo. It is singularly unable to tell me whether I am viewed as a person.

Now it is true. It can be jarring to hear disabled or handicapped out of the mouth of someone that ought to know better. Are they so indifferent that they did not bother to learn the latest words? Yet, maybe they just did not know. I cannot tell you how many times well-meaning individuals have been mortified upon learning that they no longer have the latest term. But, unless you are a journalist or a Member of Congress, it is not like there is anyone teaching you this stuff. Further, I have seldom met individuals who feel honored and educated by being told they got the words wrong. Like most buzzwords, it seems as likely to shame as to teach.

I feel that there are other ways, mostly to do with action, where I can find out if someone sees me first as a person. How did they treat me? Will they work with me? Do they seek my advice and my guidance in areas where I have experience or expertise? Will they joke with me, laugh with me, hoist a drink with me? Will they praise me only when I do something legitimately praiseworthy and call me out when I am insensitive or acting the fool?

These folks I now see me as a person first. I know it even if English is not their first language and they have used the archaic word crippled, or have asked, in the way one sees with Israelis, “what happened to you?”

It is important to put a person first, but I will take the right actions over the latest words any day of the week. Like the medical chart, I am only interested in the linguistic change if it signifies a true change in action.

To those who champion person first language, I challenge you. I am certain that you always say the right thing. Are you certain that you always actually put the person first?

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Dreams and Champions: Learning to Accept and Support Ourselves and Each Other

Dream Street is a five day, four night camping program for children with physical disabilities. The camp is held on the grounds of URJ Henry S. Jacobs Camp in Utica, MS and is sponsored by NFTY’s Southern Region. Dream Street was founded in 1975 with the mission that all children, regardless of their abilities, must be offered the chance to have fun, to make new friends, to achieve, to be accepted for who and what they are, and to learn from the challenges of group life. Each counselor is paired one-on-one with a camper and is responsible for supporting, supervising, and encouraging that camper 24 hours a day for the week. Both the children and the staff at Camp Dream Street benefit from the life-changing experiences the camp has to offer. I wrote this during my volunteering there in 2011.

I just got back from my first dip in a swimming pool in about a dozen years, where I had the privilege of swimming with current Camp Dream Street Mississippi participants – as well as one camper who I first met when I came down to Mississippi eight years ago. I came to Dream Street late compared to most participants, first experiencing it in law school as a guest of my dear friend, a long time Jacobs Camp alum, Jack Rubin. As such I can’t really say that Dream Street facilitated my development the way it has for so many kids.

And yet, in retrospect I am aware that I learned an important lesson while watching the NFTY-Southern participants take on the role of primary care-givers for people whose disabilities exceed mine in complexity. I had already learned many of the important lessons our campers learn about independence, communal dynamics and self worth because I was lucky enough to attend other URJ camps for the first two decades of my life. And here I learned, from my friends who came through the program and the current students whom I watched, that, perhaps, meeting my needs was “no big deal” (a Dream Street catchphrase) and, perhaps, I could turn to my peers as a source of care. Today my needs in my work place are entirely met by my co-workers, and while that has been an evolution that took some time, I don’t doubt that having experienced Dream Street before played a major role in that.

Camp Dream Street offers something special to three different populations. For the young campers, we have the experiences that allow them to grow and develop in a myriad of positive ways. For the older campers and participants in “Great Expectations” (a special program for teen campers), we teach them both skills and a world view, some of which I had to develop on my own as an adult. Lastly, for the NFTY-Southern kids, not only do they get incredible insight into their own abilities to be caring, nurturing & capable, as well as into the lives and realities of people with significant disabilities, they also get a level of connection across generations that I think is unparalleled in other regions. For there are staff members that come back to Dream Street for 10, 15, and in one case 35 years – starting from when they were NFTYites themselves! From my perspective, this shared experience of service bonds these NFTYalumni to each other, and to place, even more strongly, and those bonds are maintained decades after NFTY itself has ended for them. It even allowed someone like me, who grew up in another region (NFTY-Northeast) to be embraced and absorbed in his 20s by this wonderful community.

In sum then, what I can say is that by the simple virtue of its program, and the love & connection it engenders in both its campers and its NFTY-Southern participants across the years, in a single week each year Camp Dream Street Mississippi has the potential to play a pivotal role in the development of both Jewish young people (as well as their families & communities), and people with disabilities, from across the South. And, in my case, also far beyond. . .

In the years since I wrote these words, I have come to believe them even more strongly. Today we have ad campaigns trying to teach people not to be awkward around people with disabilities.  Dream Street, or something like it, takes away all of the awkwardness by replacing discomfort with familiarity. Similarly, not the day goes by when I do not encounter a person with a disability who needs to be meant toward about forcibly asking for what they need. I am no exception. Though I thought I learned the lessons of Dream Street, that my needs were no big deal and that I should be willing to ask for help, in the summer of 2013 I was reminded how far I have yet to go.

I was at a White House event giving awards to Champions of Change, specifically around issues of disability. They were an impressive group.

Each champion that spoke repeated the theme that part of their success had been in being open about and proud of their disability. I, mere weeks before, had suffered through a job interview because I was unwilling to admit that I needed some assistance to find and access a restroom. They had internalized that their differences were no big deal. I was still struggling to ask for basic help. I have learned that we need programs like Dream Street not only to teach Americans without disabilities, or even to open the eyes of those of us that have them, but as a strengthening bulwark against the message of difference and awkwardness that not all of us are quite champion enough to overcome.

I am grateful to Dream Street for what it has done for me. All cannot be done by one Camp in Mississippi, however. I encourage any who comment to think about other such programs that exist, and what other ways we might accomplish the same goal. Thank you

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Judaism and Disability 4 of 4: Halachic Living with a Disability

From roughly spring of 2001 until roughly the spring of 2002, I researched and wrote as part of my baccalaureate degree at Yale University a paper entitled Judaism and Disability. It was quintessentially a work of undergraduate scholarship, building heavily on the work of Judith Abrams, the Journal of Halacha and Contemporary Society, and what few other scholarly articles were available on the topic at the time. In the years that followed, I have spoken numerous times on the subject, usually to synagogue audiences, tailored to give them an ethical and halachic framework on which to make disability related decisions as Jews and Jewish organizations. The more times that I have given the talk, the more I have come to realize that, while scholarly treatments of this subject exist, there is a dearth of any type of written material explaining the sources and the perspectives and the practical points of view to the interested Jewish layman. These four posts are the key points in that work, largely unmodified from my undergraduate submission: Modern note: when I originally wrote this it was heavily footnoted to the various rabbinic and halachic sources from which I gleaned the rules. I was unable to reproduce those footnotes for the blog, but please write me if you are looking for sources, and remember that none of these answers are mine.

We will now move on to a discussion about those rulings that specifically relate to people with orthopedic disabilities. The most significant set deal with the prohibitions resulting from the Sabbath. The most general rulings are perhaps those to do with movement. A person who cannot walk without assistance may use a walker, wheelchair or crutches in a public domain because these are considered body parts for the person as long as the person cannot walk without them. Braces are considered articles of clothing and are permitted. Artificial limbs are considered parts of the body. Unfortunately, electric wheelchairs are prohibited for public use because even if they are activated by a non-Jew the perception may be that the Jew in the wheelchair activated it. Interestingly, as of 1991 Israeli engineers were attempting to create a switch that would make power chair use permissible. This does tend to make one wonder how a wheelchair user who is not able to self propel a manual chair is supposed to lead that as meaningful as possible Jewish life. One loophole offered now, which will be more fully explored in the section relating to carrying on Shabbat, is that a non-Jew may be asked to push a wheelchair if the disabled person has significant distress at not going to synagogue. I ask the reader to make note of the sensitivity to mental anguish as it will figure prominently in later discussion.

The wheelchair as a body part enjoys an unusual position in Jewish law. A person in a wheelchair may carry a talit in the back pouch of the wheelchair because the pouch is considered a subsidiary to the wheelchair, and the wheelchair does not know better. In this unusual ruling, the wheelchair is in some ways given its own volition, as the comparison made is that of a small child carrying a rock. As we shall see in our in-depth discussion of the Shabbat laws, such legal fictions are no stranger to Jewish legal reasoning. Other wheelchair rulings are more readily apparent. A wheelchair user, or anyone who cannot stand, may say the Amidah, customarily said standing, from his or her chair. A chair user may also sit shiva from a wheelchair instead of a stool.

Not all rulings are this permissive, however. Driving to synagogue on Shabbat is prohibited even if there is no other option. Also, on Shabbat, a disabled person may not use an elevator or an automatic door unless taking advantage of the usage of such by a non-Jew. While at first glance, this may seem harsh, insensitive, and unfair, it is important to look at these rulings within the context of the rulings that we have already seen and the tradition from which they come. Simply put, Jewish tradition is legalistic tradition. Jewish laws are law, not to be trifled with for convenience. We have seen over and over again that modern halachic authorities want to accommodate people with disabilities. In the prior paragraph, we have even observed the creation of the convenient legal fiction to allow the carrying of talit for chair users on Shabbat. It would seem likely therefore that these prohibitions are simply things that the Rabbinic authorities could not legally circumvent or accommodate. Some might argue that the law is not perfect, others would argue that the law is perfect but we don’t understand it yet.

An interesting last piece that I feel should be tacked on to our discussion of orthopedic disabilities is a small section where Rabbis have actually a modified ritual because of understanding the specific circumstances of a disability. First, they have ruled that we have the ruling that, a right handed man should don tefillin on the left arm even if it is atrophied or paralyzed, if the arm is missing the person should don tefillin on the right arm. Then, we have the other seemingly isolated ruling that a disabled person should say the bathroom blessings after first covering catheters or collestomy bags. Intrinsically, these rulings are sufficiently obscure that they are outside of the scope of this paper. Yet, the fact that Rabbinic thought and effort were put into these specific rulings, and they were in fact published, reinforces the message that Judaism wishes to allow all Jews to make their lives as Jewish is possible, though their disability may appear to stand in the way.

GUIDELINES FOR THE DEAF

The first rulings in the guidelines for the deaf are very similar to the first ruling in those for people with orthopedic disabilities. That being because they relate to what in the disability field would be considered adaptive equipment. A hearing impaired person may wear a hearing aide because it is considered an article of clothing but may not adjust the volume. One may not carry it in one’s pocket. A spare battery could be designed as an article of clothing. A microphone may be used to help a hearing impaired person hear the torah on weekdays but a microphone may never be used on yom tov or the Sabbath. I think that the reasons for these were fairly well explained in the last section. The next few rulings are what we would call reasonable accommodations, changes to an activity such that a person with disabilities can still do it, but that retain a sufficient resemblance to the original activity. Deaf people may fulfill the mitzvahs of hearing torah and meggillah by reading them to themselves. Also, deaf people may dispense with the reading of the marriage contract or may use sign language.

Strangely enough, after this spate of permissive rulings, the Rosner and Tendler article gives a very terse statement that a deaf mute is exempt from all the commandments. The first thought that comes to mind on that is the Talmudic ruling to that effect, the possible explanations for which are discussed earlier in the paper. In examining the applicability of this ruling to today, it is beneficial to examine a quote by Rabbi J. David Bleich from his book Contemporary Halakhic Problems, Volume 2. On the source sheet from the Orthodox Caucus, it quotes the following from page 375 of his book. In light of the degree of education attained even by true deaf mutes in contemporary society, it is doubtful that they are considered examples of heresh described in rabbinic references. Hence they should be encouraged to, and indeed required to participate fully in Jewish religious life, including performance of all ritual obligations as well as in Torah study. By this light, the previous ruling, while correct in everything that it said was to be applied to a category of people that existed in rabbinic times and does not exist now. The Rabbinic cheresh was unreachable, today’s deaf mute is not. As society is now able to move away from blanket exclusion of the deaf, so is Judaism.

GUIDELINES FOR THE BLIND The first ruling that we will discuss for blind people relates to Shabbat and illustrates the particular tension generated by a disability for which most modern accommodations are technological. That ruling is that a blind person may not listen to tape or radio on the Sabbath. This is immediately followed with the qualification that visiting that person to provide them with stimulation is a specially meritorious mitzvah. Again, I think this is emblematic of the tension between the highly legalistic religion and a strong desire to provide compassion.

The next set of rulings that we will discuss have to do with a blind person’s personal obligations. I will list them first, for I feel that the prevailing theme will be self-evident. A blind person is required to say the blessings over the new moon. It is preferable for others to say the Channukah menorah blessing for them. A family member should perform the search for chametz before Passover. Further, a blind person must light Sabbath candles if there is no danger to the person or anyone else. This says that you do not have to see something, be it the new moon or the Shabbat candles in order to appreciate and bless them. Yet, you are free from those mitzvot that you could not possibly perform, while still being valued enough to merit their performance on your behalf.

Now we will move in to the reasonable accommodation phase of the laws for people with visual impairments. Firstly, a blind person may have contact with his wife before she goes to the mikveh if it is for her to provide him assistance. Also a blind person may be accompanied by his or her guide dog into a synagogue. These rulings indicate to us that certain taboos, especially those relating to ritual purity can be waived in order to allow for a accommodation of disability. By allowing the assistance to trump the restrictions, one labels them a mitzvah, as these are the only kind of actions that can at times transcend prohibitions. One accommodation offered is that blind people may pray from memory. They are not, however, exempted from any of the carrying restrictions in order to carry large print or special edition (Braille or other) books. At first glance, this may seem an unjust prohibition. Yet, it is quite easy to acquire copies of such books for a synagogue, assuming that the person can use them. Clearly, if they cannot, it presents the reason for the lifting of the prohibition on memorization. If they can, why do they need any more freedom than any other Jew? It would seem that here Judaism walks the fine line between a reasonable accommodation and special treatment. It also seems that they do so quite well.

The last two rulings relate to partially sighted people. Simply, a partially sighted person may read Torah and lead prayer, and a partially sighted person may serve as a legal witness. Both of these rulings affirmed that Jewish citizenship is based upon capacity and not some mistaken idea of the ideal.

The Shabbat Laws I already mentioned in the introduction to this section the compelling reasons for an in-depth discussion of the Shabbat laws. I will not reiterate that now, but stop only to remind the reader that we will start with a discussion of medical treatment, move to a discussion of technology on Shabbat, and finish with a discussion of the laws of carrying people.

MEDICAL TREATMENT Jewish law contains within it an imperative to heal. Life is a precious gift from God, as is the ability to save life. A doctor that does not practice his art is likened to a murderer. Yet, refuah, healing was not permitted on the Sabbath. The original prohibition against healing on Shabbat was in case herbs should be ground to make medicine. Grinding is prohibited on Shabbat. This ruling has been much debated in modern times, when people do not grind their own medicine, nor do doctors prepare medicine on the spot. The prevailing idea is not for abolishment, since in some places people do still prepare their own medicine, but rather that this fact should engender leniency. Leniency aside this remains the main concern to this day. There is, however, one other significant concern. Most of modern medicine requires the use of electronic equipment. While specific discussion of these laws will be held until further section, suffice it to say that this is customarily prohibited on Shabbat. The values used to address these prohibitions are extremely germane to our discussion. Not only is medical treatment itself a prime issue for disability, but the issues of suffering, anguish, and pain are also applicable.

The priorities of violation and healing on Shabbat are pretty straightforward. All Shabbat and most ritual prohibitions can be waived in the preservation of life, pikuach nefesh. Still, medical treatment should be done in the least transgressive way possible. For instance, it is permissible to control diabetes with insulin on Shabbat, but only if dietary control is not a viable alternative. For even serious illness, any prohibitions can be waived to provide the treatment needed. For general illness, wherein one is infectious, in great pain, or bedridden, but a threat to life is not present, one may perform rabbinically prohibited activities shinui or instruct a non-Jew to perform even a biblically prohibited task. Rabbi Moshe Feinstein considers impairment of function due to medical condition to be the same as being bedridden.

An act done shinui or kilachar yad, as with the other hand or different, constitutes a kind of rabbinic prohibition that can be violated to alleviate pain or to prevent great financial loss. Usually, performing an act shinui should be somewhat more difficult or complicated than performing the act in a standard fashion. An example might be kicking an automatic touch plate rather than pressing the button or tearing something with a full body movement rather than by jerking your hand. Rabbinic prohibitions are actions that the Bible does not prohibit, but for reasons such as a similarity to a biblically prohibited act or the potential to lead to a biblically prohibited act. These prohibitions are still binding, but it will become clear as we move through various halachic rulings that they are not given the same weight as biblical prohibitions.

Wherein there is risk to a specific body part, one may do tasks which are rabbinically prohibited without doing them shinui. If there is thought that this may become life-threatening, then one may do even biblically prohibited tasks. With illness in a specific body part, but no great pain and no threat, one may only do rabbinically prohibited tasks through a non Jew.

So far, these rules seem eminently pragmatic. Danger is identified, indexed, and treated. Interestingly, however, Jewish law seems to have made the jump to understanding the significance of psychology in ways the medical profession has yet to go. Prohibitions against various activities can be bent, especially rabbinic ones, if something needs to be done to treat mental anguish related to medical condition, even if the doctor thinks such measures are unnecessary. Many rabbis will permit rabbinic transgressions even when the anguish is not directly related to the malady at hand. A truly startling expression of this is in the fact that one is allowed to light a light for woman in labor to ease her mind. This is clearly done to relieve psychological anguish, as it can even be done for a blind woman.

The medical ethics of Shabbat are therefore quite straightforward. Most interesting for this analysis is not the varying categories of illnesses, but rather, the clever methods for circumventing prohibition and, most importantly, the recognition of psychological anguish as sufficient grounds for the violation of a rabbinic prohibition, certainly as matched with other legalisms.

ELECTRONIC DEVICES

Continuing on, we move to a discussion that at first glance has very little relevance to our topic, except perhaps with regard to elevators and other adaptive equipment. Indeed, later in this section we will discuss elevators at length. This lengthier discussion of electronics, taken mostly from one article, is not meant to be exhaustive. Rather, it is to examine the lengths to which modern rabbis will go to allow Jews to enjoy the conveniences of modern technology on the Sabbath so that the reader will be better able to appreciate that the extensive lengths gone to in order to justify carrying people with disabilities that we will see later can be better understood. For instance, we know that kilachar yad can be used to perform a rabbinically prohibited act to allow one to avoid a biblically prohibited act. What is interesting is that potential situations recommended in this technology article include unplugging a refrigerator kilachar yad so that the light will not go on when you open it. While I suppose that this could be to prevent one from starving, to me it smacks of simple convenience. This is a more lenient standard than great pain or anguish.

The overarching issue with regard to electronic devices is very simple. Completing a circuit is work such as at least one of the prohibited categories on Shabbat. Also, anything incandescent is considered to be the same as kindling fire. As a general removal of all electronic devices would represent a significant inconvenience for the modern Jew, legal loopholes have been developed, some of which we will explore now. I offer this caveat, however. As my concern is the law and not the technology, I will often outline the loophole without giving specific examples in electronics.

The first legalism offered is the following. Halachah rules that it is okay to do a permitted action on the Sabbath even if that permitted action could possibly cause a biblically prohibited action. This is called a davar she’eino mitkaven, an unintended act. The Talmud prohibits however that this idea be taken to an absurd extreme by forbidding an action that will definitely lead to a prohibited action. There is some question as to whether or not this only applies to secondary consequences beneficial to the doer of the original action. If the benefit of the secondary action is not to the doer and is therefore clearly unintentional, it is a rabbinic prohibition. A poor example of this might include passing through an elevator door and triggering its sensor not at a time when it is pointless, but rather just as the timer was about to run out, thus keeping it open unintentionally. As an interesting addition to this, it seems that in Jewish law, ignorance is a defense, as it were. An unintentional act is permitted. Therefore, a secondary prohibited act of a permitted act is not prohibited if the doer of the primary act was unaware that the prohibited secondary act would occur.

Another category of leniency in prohibition of labor on Shabbat is one where the benefit derived is not the purpose of the action with regard to the mishkan, called malacha she’eino tzericha legufa, a hole dug for the dirt if you will, rather than the whole. The mishkan was the sight of ancient Jewish worship and is often translated Tabernacle. One example of work where the purpose differed would be turning off lights to gain darkness, since the extinguishing of flame in the mishkan was to gain the black ash. This class of prohibition could only be violated to serve the public safety, not to prevent significant financial loss as in the case of other rabbinic prohibitions. It is quite possible, however, that again significant pain or mental anguish would allow this class as well.

The final class of prohibitions discussed in this article was a grama. A grama is an indirectly caused action. This is rabbinically prohibited except in cases of potential great financial loss or likely comparable moment. An example given is that of putting barrels of water in front of a fire so that they will burn, explode, and extinguish the fire. A common example of this is a thermostat operated appliance, permissible on Shabbat. Latent circuit devices use this principle to be permitted, such as a grama telephone, because rather than completing a circuit one simply removes the impediment to a circuit. This category is particularly significant to our discussion because the wheelchair in development discussed earlier in the paper runs on the grama principle. The chair would have a latent current running at all times.

Now, we will discuss the adaptive technology that is perhaps the most ubiquitous and one of the most useful for people with mobility impairments, heart problems, and numerous other issues, the elevator. I cannot critique the halachah of elevators because each of the rabbis quoted has a greater understanding of the engineering than I. Rather, I will reproduce it here. The halachah of elevators is complicated, and the debate seems to rage over several issues. Rabbi Yitzchak Weisz forbids riding in even an automatic elevator because the presence of even an extra passenger causes the motor to draw more current. Rabbi Yaakov Breisch rules that just as the Talmud prohibits one from being transported in a chair carried by others and this teaches not to ride in a trolley or on a subway, so it teaches not to ride in elevator, as he feels there is no distinction between vertical and horizontal travel. Rabbi Yosef Henkin and Rabbi Yehuda Unterman rule that since the elevator and not the person is doing the work, an automatic elevator is okay. Rabbi Breisch’s ruling does not appear to have any normative authority. After this, things get even more complicated. Rabbi Halperin rules that one may ride in an ascending but not descending elevator, as an ascending elevator causes the motor to draw more current, which he feels is halachically permissible. The descending elevator has two problems. One, a standard descending elevator uses the weight of its passengers to descend, and the halachah rules that one is responsible for actions caused by one’s weight trade. Two, a descending elevator generates current that is fed back into the buildings power grid. Rabbi Halperin is working on a special elevator without this problem. It should be noted, however, that the question of weight responsibility is disputed, and most authorities will allow the riding in an automatic elevator.

Moving away from these technicalities, we come to rulings most specifically relevant to people with disabilities. This is a group for whom the elevator is the only option, a group who needs to find out how to use it. One is permitted, according to some rabbinic authorities, to ride in an elevator operated by a Gentile provided that that Gentile was not operating the elevator on the Jew’s behalf. People with disabilities, however, have an even better option. For an even mildly sick person, or to facilitate performance a mitzvah, one may ask a Gentile to operate the elevator.

CARRYING Carrying is one of the thirty-nine categories of work biblically prohibited on Shabbat. It is important to note that pushing a wheelchair is considered carrying. The various loopholes that may allow this are what we will explore here. One may carry a human being who is potentially able to carry themselves even if they’re not doing so at this time, and be subject to only a rabbinnic prohibition. The minimal qualification to say that one is able to carry one’s self (chai nosei et atzmo) is that one can walk with help. If one is too sick to walk, is tied up, or is never able to walk, then they’re no longer considered chai nosei et atzmo.

By now, the reader should be aware that when a rabbi reduces something to a rabbinic prohibition, he is looking for a way to make the activity permissible. For carrying, they create a special rationale above and beyond what is normally necessary to violate rabbinic prohibition. In order to violate the rabbinnic prohibition one must do so shvut d’shvut, in essence create a situation where one is doing a rabbinnic prohibition through a method which would itself change a biblical prohibition into a rabbinnic prohibition. In essence, this can only be done in time of urgent need. This can include great pain, including emotional pain, potential great financial loss, and desire to fulfill a mitzvah, such as visiting the sick or going to services.

The next question is how to create this situation of a double rabbinic prohibition, understanding that the carrying chai nosei et atzmo is the first rabbinic prohibition. Possible methods include telling a Gentile to do the carrying, pachot pachot me’dalet amot, or shenayim she’osu. Pachot pachot me’dalet amot is the process of circumventing the limitation of carrying no more than 4 amot into public domain. The method, rabbinically prohibited, is to carry the person or object in stages of three amot. In order to get between a public and private domain one would stop in the middle of the transition point and start again which is never in fact carrying the whole person from the two domains. These methods, combined with chai nosei et atzmo, constitute a shvut d’shvut. When two people perform an act which could clearly be performed by one person is called shenayim she’osu, and this takes any biblically prohibited act and changes are to a rabbinic prohibition.

Clearly, our most pressing interest is how this can be applied to people with disabilities. In addition to questions such as carrying into a house for an oneg, shvut d’shvut can be used to push someone in a manual wheelchair for the reasons listed above. Remember that a wheelchair user is not chai nosei et atzmo, and therefore one must create the shvut d’shvut in its entirety. Some examples might be to have a Gentile pushing the wheelchair pachot pachot me’dalet amot, or for Jews to push the chair shenayim she’osu and pachot pachot me’dalet amot.

There is one more extremely ambiguous case, the Carmelit. A Carmelit is a rabbinically designated public space such as a “bungalow colony, an open field, a village street, or a body of water.” Originally, such spaces did not qualify as public areas, but they were a gray area that could easily lead to or have been mistaken for a public area. Furthermore, they weren’t private domains and needed some classification. Some consider that carrying one who is chai nosei et atzmo in a Carmelit is permitted because it is gezeira l’gezeira, a double precaution. Double precautionary measures automatically cancel each other out, with more finality than a shvut d’shvut. Others do not consider a Carmelit gezeira, though even they recognize this as an automatic shvut d’shvut.

The overriding idea is that rabbis’ go to incredible lengths to attempt to make the pushing of wheelchairs permissible. The only real place worth expressing any discontent with their attempts is that they do not see the extent of the potential mental anguish that exclusion would create. I am willing to argue that the psychological need for inclusion rates at least as high as the significant pain medical prohibition. Thus, I feel that pushing a wheelchair should not be a shvut d’shvut question, but rather one of creating only one rabbinic prohibition. This may seem unimportant and legalistic to some, but in practicality it has to things going for it. One, it recognizes the sheer weight that the psyche places on inclusion. Number two, it allows Jews to push the chair pachot pachot me’dalet amot, shinui, or in a Carmelit. To close this portion of the discussion, it is important to note that an eruv trumps these questions for a manual chair.

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