Saving the World, Over and Over, One Life at a Time.

“Whosoever preserves a single soul of Israel, scripture ascribes [merit] to him as though he had preserved a complete world.” I have known this quote from Mishnah Sanhedrin 4:5 since literally before I can remember, which is to say that I literally do not remember a time before I knew it.  I even sang it as a child in a catchy tune at summer camp.  And, while the intellectual idea of the limitless value of one human life is a concept with which I have been comfortable since I was a teenager, I think that I sometimes lose it in my work.

As a consultant to corporations and nonprofits, and a former federal official, having the greatest impact for the most people is a watchword, and it should be.  And yet for all the talk of maximizing numbers, it’s nice to have a wake-up call about the power of helping an individual.

I have been privileged, since I moved to Boston, to have multiple interactions with the work of the Ruderman Family Foundation.  I have been honored to write, honored to consult, and honored to share whatever knowledge I have to contribute to important work.  Because I am something of a policy wonk and a technocrat, much of this discussion has been big picture.

Last week, however, I had the opportunity to experience the work of the Foundation through a different lens.  I had the dual experiences of my first meeting as a member of the Jewish Services Committee of Jewish Vocational Services in Boston, under whose auspices is found the RFF sponsored Transitions to Work Program, and of attending Sweet Sounds, the annual Gala of Gateways: Access to Jewish Education, another program made possible by the Foundation.

In both situations, I heard deeply moving personal narratives from parents whose children’s lives had been completely transformed by these programs, from parents on the Jewish Services Committee whose son had transitioned from dependence to employment, to the moving story of Gateways parents who had relocated from New York so that their daughter with significant disabilities could have the Jewish education that was such a deeply cherished value for them.

Two lives in their own way saved.  Twice the entire world saved.  To hear these stories, to feel these stories, one cannot think that they were anything less.

We continue to strive for systemic change.  I would like to see comprehensive employment programs like Transitions replicated throughout the country.  Even more, I feel that the work of making Jewish education and Jewish heritage accessible and available to all Jews is a sacred mission, and that the Jewish world should be committed to expansion of Gateways style programs and services to its every level and facet as a moral imperative.  But these are big picture goals, and focus exclusively on them risks of securing the tremendous power of each individual experience.

So I honor the work of the RFF, as do so many, because of the cumulative transformative effect on the lives of Jews with disabilities.  But, I also honor it, and others like it, for the incalculable value of each life so transformed.  There is more to be done, and I have great confidence that the work will continue, but at this moment, I honor all of the worlds already saved.  Kol hakavod.

Votes, Violence, and Value: A Plea to Recognize the Basic Worth of the Lives of People with Disabilities

I voted today. It was no big thing, really.  I went out my back door to my polling place, located about 1000 feet away.  I was looking around for the entrance and saw another gentleman in a wheelchair approaching the building, and asked him if he knew where it was.  He said I was in the right place, and that I could follow him in.

As we rolled in together, chatting amiably, he said “and it’s fully accessible.  We don’t ask for much, just to be able to get in.”  Once I did get in, the experience was very smooth.

My polling place has this handy touch screen machine that filled out my ballot for me, far more convenient and less intrusive than the cumbersome process from my polling place in New York where two poll workers, one Democrat and one Republican, would have to sit with me while one marked my ballot.

I used the machine, handed over my ballot, and came home planning to write a blog post about progress, contrasting the New York process and the Massachusetts one.

Then, I remembered a Facebook post from my wall this morning, and autistic activist friend who wrote, in in response to the horrific murder of the six-year-old autistic boy thrown off of a bridge by his mother “You want to know the most basic thing you can do for autism acceptance?

STOP F****** KILLING US.”

Accessible polling places are important.  The franchise is fundamental to our acceptance as citizens.

A basic right not to be murdered, though, is fundamental to our acceptance as human beings.

Now, you will argue with me that the murder of people with disabilities is already illegal, that the seemingly endless stream of grisly murders, especially of people with autism and intellectual disabilities by parents or guardians, is already illegal.  You will say the same about the fairly frequent stories of law enforcement officers using excessive and sometimes deadly force on people with sensory or psychiatric disabilities who react to approach or arrest in ways that surprise the officer.

There is that.

But every time one of these stories is reported, some subset of voices, hopefully a minority, talk about how it is justified.  They tell us that we can’t understand how hard the perpetrators of these crimes had it, what they were going through.  Some will even label this a tragedy, but not a crime.

Homicide doesn’t occur in a vacuum.  Almost every homicide has precipitating factors, which can range from horrific abuse, to unspeakable provocation, to a systematic socialization in an unacceptable moral paradigm.  There are very few killers who have no answer to why they kill.

Sometimes our justice system allows these factors to mitigate sentences.  Sometimes we recognize that circumstances might temper punishment.  As far as I know though, nobody ever tries to argue that these factors obviate the criminal nature of the homicide.

Yet, certain disabilities, like autism, seem to be fair game for this argument.

How can that be?  To me, it can only be with a subconscious degradation (I’m deeming it subconscious to give all who hold this perception the benefit of the doubt) of the humanity of the victim.

Many would agree with the statement that self-defense or the immediate defense of another are the only justifications for the murder of another human being.  If the same person can entertain a gray area around people with certain disabilities, they are applying a different standard.  Certainly, the media discourse seems to imply such a standard.

I voted today, and that’s important.  I’m glad to be enfranchised, and I salute the work of all of those that push to expand the franchise to the many Americans, with disabilities and other minority statuses, functionally or actually denied the right to vote.

But, it’s easy for a privileged professional with a physical disability, a definition that fits me and which I believe would have fit the individual who showed me to the polling place, to lose sight of how low the bar is set for many of our less privileged brothers and sisters.

The gentleman who showed me to the polls said that all we are asking for was to get in the door.  For many of us, the goal is so much simpler, “stop F****** killing us.”

Stop killing us.  No matter how many times I repeat it to myself, it doesn’t lose its powerful simplicity.

Most of my readers can’t directly stop any killers.  But you talk, and you write, and you vote.  You, too, can influence the changing perceptions of society.  So, the next time a tragedy like this comes to light, and, sadly, there will be a next time, change the dialogue.  Let us not let compassion for the difficulty of others eclipse the fundamental value of a human life brutally taken, which is never okay.

Call people on the attitude.  Get them thinking.  When there is the opportunity to influence change agents, get candidates to commit, and exercise your votes for those who recognize the value of the lives of people with disabilities.

From my electronic voting machine, it can feel like we have come very far.  From these news stories, it can feel like we are nowhere at all.  So let’s take the first step.  Recognize that humanity is a basic attribute regardless of disability, and demand that people, “stop F****** killing us.”

The Many Ways and Many Whys of Speaking Up: How We Can All Take a Lesson from Tim Cook

Last week, Apple’s Tim Cook publicly acknowledged that he was gay.  As Mr. Cook’s words clearly demonstrate, he didn’t come out, because he hadn’t been in a closet. Said Mr. Cook, in an article that he wrote entitled “Tim Cook Speaks up”, Mr. Cook points out that, for years, he has been “open with many people about my sexual orientation. Plenty of colleagues at Apple know I’m gay,” But, as Mr. Cook said, he didn’t publicly acknowledge it.  He didn’t, in his words, speak up.

His reasons strike me as easy to understand.  He says

“Privacy remains important to me, and I’d like to hold on to a small amount of it. I’ve made Apple my life’s work, and I will continue to spend virtually all of my waking time focused on being the best CEO I can be. . .  I’m an engineer, an uncle, a nature lover, a fitness nut, a son of the South, a sports fanatic, and many other things. I hope that people will respect my desire to focus on the things I’m best suited for and the work that brings me joy.”

In a way, this parallels my own journey around disability.

Obviously, my disability was never a secret.  I travel through the world in a power wheelchair, among other things.

And yet, there was a time in my life when it was critical to me that I be identified with my varsity academic team skills and my Hillel leadership, and pulled sharply away from identifying with the disability movement.  It wasn’t until directly confronted with a specific need that I was the only one able to fill that I first took on a disability related role.

Like Mr. Cook, I realized that I had to speak up.

15 years after my first public disability leadership role and having recently completed a term in one of the highest profile disability offices in the federal government, I still wrestle with this issue.  I still tend to apply to jobs were my primary value is my legal prowess or my business acumen, even if I apply it in a disability context, and I ask people to recognize that I am more wonk than activist.

Equally important, I try to make clear that, though I am a straight white person with a disability, I am extraordinarily passionate on questions of justice and equality for people of color and the LGBTQ community.

Very few people are one-dimensional, and I think it is very natural to want to be identified by your talents rather than your minority status.  And yet, says Mr. Cook, that desire for privacy, which reads like a desire not to be labeled was holding him back from making a difference.  He says,

“I realize how much I’ve benefited from the sacrifice of others. So if hearing that the CEO of Apple is gay can help someone struggling to come to terms with who he or she is, or bring comfort to anyone who feels alone, or inspire people to insist on their equality, then it’s worth the trade-off with my own privacy.”

Even as it was important for Mr. Cook to continue to be identified with the incredible talents that he brings to Apple, he recognized that, by the very fact that he was the CEO of Apple, he had a certain role to play in the quest for equality, if he embraced it.  I like to think that my own embrace of disability as a cause was motivated by something similar.

Unlike Mr. Cook, I am now an intentional activist, but, even when I’m wearing my corporate lawyer hat, I tried to live in a way that publicly embraces that I’m a corporate lawyer with a disability.  I speak to bar associations and groups of children.  I serve on diversity committees, and try to help my legal employers when they seek the disability perspective.  I embrace both roles because I know that to do so is a way to make a difference.

And I do believe that it needs to be an intentional choice.  We have become a polite society.  For better or worse, despite my very visible disability, very few people are going to approach men disability issues unless I open the door.  I think that’s a good thing, I think it should be a choice.

It should be a choice because everyone has their own circumstances to deal with, but I encourage those who can to speak up.

If you are a person with a disability who does not feel the need to hide that disability because of a high risk of discrimination, even if you don’t think of yourself as an activist, think about publicly embracing the label.  Embrace it to become an example to the searching for role models, a living example to your coworkers that people with disabilities are just like them.  Don’t drop your life and become an activist unless you really want to, but think about how you might do as Mr. Cook is done and turn the life that you are leading into your own form of activism by speaking up.

Language and Intent, Part 3 of 3: The Quiet Power of Inclusive Language

Though I fancy myself a committed Jew, I’m not always well behaved at services.  In fact, some friends would say that I’m downright snarky.  The historical targets of my snark are interpretive English readings that I find ridiculous, or liturgical choices that seem to me to be divorced from any coherent theory of prayer.  I know, I’m a snob, I should do better. Lately, however, I’ve been snarking about something new.

By way of background, Judaism is a religion of choreography, a lot of standing and sitting, and so many times in a service you will be asked to please rise or told that you may be seated.

For most of my life, I’ve ignored this.  Jewish law expressly understands that those of us that cannot stand do not have to, and it just wasn’t a big issue.  Lately, provided that I’m in a service where the low mutter between congregants is standard, I will often mutter to a friend something to the effect of “I decline” or “I choose not to” and when exhorted to be seated, I will point out that I already am.

Frankly, this habit surprises even me.  I’m nearly 33 years old and I didn’t make this juvenile joke very often when I was 10.  I started to think about why.

In just a few synagogues where I have been, the exhortation has been changed to “please rise if you are able.”  When I first heard this, I thought it a non sequitur.  It was a restatement of an idea so obvious that I thought that it simply need not be said.

My wheelchair is self-evident.  Even for people whose mobility impairment is not self-evident, unless the Rabbi or service leader were to be replaced with Kanye West, I don’t think that anyone is going to take someone attending the service to task for failure to rise.  There is no discriminatory practice needing to be fought.

And yet, this little change was having an effect on me.  The simple linguistic acknowledgment that I, and people like me, existed in the congregation, demonstrated by a simple word choice, meant something to me.  I’ve come to realize that my snark was my subconscious reaction to feeling linguistically excluded after being linguistically included.  These service leaders had raised the bar of my expectation.

In the first piece of the series, I wrote about the unconsidered intent of poorly chosen language.  In yesterday’s piece, I wrote about the meaninglessness of even the most proper language if divorced from meaningful intent.  The little change I have described above points to the incredible power of intentional language.

As I already said, I’ve known since early childhood that Jewish law did not require me to stand up.  The people adding a qualifier, therefore, have done nothing to change my behavior (I couldn’t stand up if I wanted to) and did not even assuage a nonexistent guilt.  What they changed was the subtle societal message that the choreographers of our services and framers of our instructions just weren’t thinking about people like me.  They taught me that at least one, the speaker at that moment, had thought of me, and framed his or her words accordingly.

This felt good.  I’m 33, and that had my fair share of accolade and friendship, and yet this four word acknowledgment of my existence spoke to me at a level that I didn’t even realize, and raised my expectations.

This, then, is the message with which I would end this series.  Poorly chosen language is hurtful because it conveys negative associations, or at best a lack of thought, and should be avoided.  Formulaic language, is better than actively negative language, but is pretty meaningless without intent, and can be trumped by even the wrong language with the right intent by those who just don’t know the formula.

The most powerful language, however, is that which conveys a respect and positive intent to include.  If there’s one prescription I can give, it’s to choose your language around disability carefully.  Not carefully in order to ensure knowledge of the latest buzzword, about which I could care less, but carefully to convey the attitude of inclusion, respect and love that I know that my readers all carry and their hearts.

As long as that is the principle, from my perspective, you can’t go wrong, because your language will find a way to convey your intent.  And, if you routinely convey that intent, you may raise the bar for everyone, even me.

Language and Intent, Part 2 of 3: The Difference between Person First Language and Putting the Person First

To my most avid readers: you will recognize this as primarily a reprint of an archival post on the blog.  I have reworked it slightly to fit into this series, and also assume that, since it was posted as part of my launch collection, and never had its own day, it is new content for the vast majority of readers.  Enjoy! 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.  As I pointed out in some length in part one of this series, sometimes indifference tells its own story.

And yet, unlike the lack of reflection that I posited yesterday, focused as it was upon words the plain meaning of which is offensive, a failure to use “person first” language strikes me as more likely to be a function a deficit in inside knowledge rather than a deficit in reflection, especially since it is far from intuitive.

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.  And strident corrections seem more likely to shame them 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.

Yesterday I argued that a lack of choice in language can demonstrate hidden attitudes and demonstrate a benignly ablest intent.  Today, I argue that one can use exactly appropriate language, and it can demonstrate nothing more than good media training.

To those who would champion person first language, I ask you, how certain are you that the person is first?

Language and Intent, Part 1 of 3: Unintentional Messages

Just a second.  I’ll be a minute. It’s amazing how often I hear these phrases, and I’m sure you do to, and I can’t remember one instance where the delay was actually a second, or minute.

It’s awesome.  It will change your life.  We hear statements like this so often that we don’t even really have words to appropriately express true life change and awe.

In the current American idiom, many expressions are fairly well divorced from their original roots, or their literal meanings.  I’m fairly certain that this is the normal progression of the English language, and one might think me a picker of nits (no longer referring to the eggs of lice) for mentioning it.

And yet, for loaded words, for particular expressions, that very forgetfulness, or unwitting ignorance, can become an issue of division and hurt.

He’s crazy.  She is a moron.  Virtually generic insults on the playground, and yet with such explosive potential.

Unpacking for a moment, we are reminded that crazy was and sometimes remains a derisive term for people with certain psychiatric disabilities, and moron was one of the disturbing terms used to lump, label, and dehumanize people with intellectual disabilities in an earlier era.

These loaded terms, used without intent in societal discourse, can be deeply offensive to people with disabilities, both because of their history and because of the notion that a label of a particular disability should be an insult.

My goal here is not to explore this phenomenon in-depth, because the idea is fairly simple, or to provide a primer about it, though I will direct you to an excellent list of offensive terms with a certain amount of explanation provided by Lydia Brown, a prominent autistic blogger.  Rather, it is to think about why it is offensive.

I think that part of the reason that such language is troubling is the lack of reflection represented.  Some of the items on Lydia’s list have obscure origins, but one needs no historical background to understand why using mental illness or intellectual disability as an insult might be offensive.  It takes little more insight to realize why an expression like “confined to a wheelchair” or “afflicted with cerebral palsy” might be offensive.  I don’t think many who know me would call me a confined and afflicted individual, for all I am a person with cerebral palsy who uses a wheelchair.

This, then, is my perception of the real problem that results when we take the American tendency to shy away from any sort of meaningful evaluation of our use of language and apply it to terms related to disability.  The very practice represents a lack of reflection on the underlying assumptions in the phrases.

Even this would probably not matter if disability discrimination were a relic of ancient history.  It is moderately interesting to find out that a cultural idiom results from a conflict that has been over for hundreds of years.

The problem is that the attitudes reflected in these expressions, even if not actively held by the speaker, are active in our society today and do great harm.  We still stigmatize the mentally ill and those with intellectual disabilities, and many who do not know me would indeed pass me on the street and presume me to be confined and afflicted, and we must battle those presumptions with mindfulness.

Tomorrow, in part two of this series, I will substantially reprint my earlier piece on person first language, and the importance of the attitude of the Speaker over particular phrases used.  Today I ask you to hold on to the idea that when the substance represents a lack of mindfulness of ongoing discrimination still suffered by a population, the inattentive phraseology can become a part of intent.

Think about it, read Lydia’s list, and think about the preconceptions that may be consciously or unconsciously conveyed in our word choices.  Then, let’s change our thoughts by changing our words.

The Joy of Purpose: A Hidden Benefit

I’m having a challenging year.  When I left my law firm, at what seemed like a natural moment in my career to part ways, I was looking for in-house work, and also to step up my disability consulting.  I was very excited about my next adventure, and not terribly focused on what I was leaving behind. A year has passed, or near enough, and I have begun to understand what being a lawyer, and by most accounts a successful one, meant to me.  Certainly, it was a source of financial security, and I miss that security keenly.  Until a few weeks ago, however, it was hard for me to verbalize what I was really missing.

In early September, I was approached by an organization to come on board to help them draft a simple contract.  Over the course of the work, I got to flex my mental muscles, practice my craft, be recognized for my skill, and contribute to the needs of the organization.  And yes, I got paid.

But the money, a sum that is less than what I have received for simple research from other, better funded clients, was and is secondary.  For those weeks, I got to feel useful again, talented again, a net creator of value.

And that was what I missed but I could not have articulated.  I missed the sense that my efforts and my skills were providing real value for someone else.

When you get down to it, this is something that I have taken for granted.  I can point to accomplishments from every nonacademic period in my life from age 16 onward.  Whether as an intern pointing to specific projects, a tutor pointing to students, or, later, a lawyer pointing the clients served, I have been able to say that my life was providing particular value to a defined set of beneficiaries.

The sense of being valuable is so central to my identity that I never could have articulated it until I lost it.  It was my solace through times of difficulty, and my source of confidence to maximize times of growth and opportunity.  It framed every challenge, and every justification in my own mind for the massive investment of effort and love that others place in me.  Not because they require it, but because I need it.

As we come to the end of National Disability Employment Month, I encourage folks to explore the question of disability employment through a different lens.  The poverty of people with disabilities is a heart-wrenching but often explored topic.  Absolutely, we need employment to break that cycle.  But there is more.

Rich or poor, disability or no, I feel that there is something fundamental to the human condition about feeling useful.  Though the vast majority of unemployed people with disabilities struggle financially, there are plenty who live comfortably on family wealth, injury settlements, insurance policies or some other source.  I bet if we were to survey them, even if money is not a concern, the vast majority would indicate a preference to add value to the world with their lives.

This, then, is the ultimate value in creating a society where people with disabilities can and do work, and by work I will include anything from top dollar salaries to donated time, provided value is being created.  There is nothing quite like the feeling of being useful, of knowing what you have to offer the world, and having the opportunity to offer it.

For so many people with disabilities, despite having so much to offer, whether strength or smarts, insight or compassion, companionship or fiery activism, today’s world doesn’t offer that opportunity.  And so we are left to feel less, somehow.  Perhaps loved, maybe even cherished, but not needed.

Speaking from experience, feeling valued and needed is a huge component of an increased sense of self-worth and well-being.  Even as society benefits from having its needs met, and people with disabilities benefit from whatever tangible compensations come from their talents, we all benefit as we begin to recognize the value and each and every person.

So let’s continue our efforts.  Employment, yes.  But for those of us for whom compensated employment is either temporarily or permanently unavailable, I recommend, in the words of curmudgeons everywhere, to make yourself useful.  You may be amazed at the benefits, not just to you but to society.  And for those working on the employment of people with disabilities, think outside the box.  We talk about employment first, I want to push the envelope further and include more people by saying value first.

I have no genius solutions, I am merely sharing a little bit of recently earned self-knowledge.  Thanks for reading.

The Employment Puzzle: Maybe It Is a Numbers Game

I have heard some fair criticism lately of the amended regulations around Section 503 of the Rehabilitation Act, requiring all federal contractors to work to bring their work forces up to 7% people with disabilities.  And it’s true, targets and quotas can backfire. On the other hand, I have seen some interesting examples which demonstrate to me the value of increased numbers in promoting the inclusion of minorities in employment, and there is some reason to believe that raising percentages might finally begin to solve the perception problem in disability employment.  To me, this is at least as important as intentional discrimination and failure to accommodate.  Let’s look at some other minorities for a moment.

Nobody that I know is concerned that Joe Biden is a Catholic, and despite all of the drama around the withdrawn candidacy of Susan Rice for Secretary of State, as far as I know, her gender was not a significant topic of discussion.

Yet, when John F. Kennedy was running half a century ago, his Catholicism was a major issue, and when Madeleine Albright became Secretary of State a mere 15 years before Rice’s candidacy, her gender was, if not controversial, at least monumental.

So what changed?

In the case of Catholicism, one could argue about the vast change in American society’s approach to religion in the last 50 years, and, one can make an only slightly less convincing argument about gender since the 1990s.  I’m not convinced by these arguments, however.

I think the changing attitudes are a result of experience and familiarity taking these concepts from uncomfortable and unfamiliar, and thus informed mostly by lack of knowledge, to concepts so familiar that they are barely noticed.  After all, Rice would have been the fourth Secretary of State to be a woman (even the second woman to be Secretary Rice, oddly enough), and, in presidential races, both of the last two Democratic tickets have had a Catholic candidate. (Three if you count Obama Biden twice.)

At a certain point, it becomes unremarkable, and that’s a good thing.

Taking it out of the political arena, I have noticed this trend, albeit more slowly, applying to women Rabbis.  Though my movement of Judaism has been ordaining women since before I was born, and the Conservative movement followed suit before I was five years old, when I was a child, women rabbis were something of a novelty.  I knew several, as my life has always been replete with rabbis, but, even for me, it seemed worthy of notice and comment.

By the time I left home and was traveling more broadly, women rabbis were no longer a novelty in my life, but it was not uncommon to hear people remark that such and such a congregation had hired a new Rabbi and to add, in a surprised tone “She is a woman!”

These days, at least in the Jewish communities in which I have lived in Boston, New York, and Cincinnati, women rabbis, at least in junior and mid-level roles, no longer seem to draw comment.  Only non-Jews ever seem to react with confusion when I tell them that my sister is a Rabbi.

This is not to say that women rabbis don’t still suffer discrimination, as they certainly do.  It’s also not to say that there is not still progress to be made, as their most certainly is, as the dearth of women in senior rabbinic positions demonstrates.  Rather, it is that we appear to have moved beyond a societal perception that the rabbinate is an all-male environment.  Even in the Modern Orthodox circles in which I sometimes travel, while there an unwillingness to ordain women as a matter Jewish law, I think that in countering a woman Rabbi from another movement is considered unremarkable.

So, how does this relate to disability?  Disability employment numbers are abysmal.  As a practical matter, this probably means that the majority of Americans do not have, or at least unaware of, any coworkers with disabilities.

It is not uncommon at social events for people to be quite surprised to find out that I’m a lawyer, not because lawyers don’t hang out in the yuppie Jewish circles that I do, but because people in large power chairs don’t fit their preconception of lawyer.  I have experienced going down 6^th Avenue in a full suit, and been stopped by passersby who try to give me change, because in their worldview, as a person with a disability, I must be destitute, regardless of what my expensive clothing should be telegraphing.

Why, then, should we expect that the perception is any different in a job interview.  Perhaps not even consciously, the interviewer is likely filtering my answers through a perception bias telling him or her that I am not what a lawyer at their firm or corporation looks like.  Some will overcome this, either recognizing their bias or simply privileging my qualifications and answers over vague unease, but many others will find my candidacy inexplicably lacking, in part because that unease prompted them to so find.

Quotas, well administered, and focusing on quality of recruitment and substantive jobs, rather than just second-class box checking, are a huge factor in changing that.  Simply by drawing the connection between disability and coworker in the mind of an interviewer, or disability and gainfully employed in the mind of society, the attitude begins to change.  Familiarity breeds acceptance.

More importantly, if people with disabilities are present in sufficient number, and not set up to fail, they don’t need to be mind-blowing employees, inspiring all with their abilities, to change perception.  (This is not to say that they do not need to be competent.)

The comfort with Susan Rice’s gender was not because the average American made a reasoned decision based on the tenures of Secretaries Albright, Rice, and Clinton, (in fact, I think you’d be hard-pressed to find anyone in the American electorate who is partisan for both Clinton and Rice), but rather because, after three female Secretaries of State, covering about 75% of the time since Albright’s confirmation, the American people have become accustomed to the concept that women can occupy this role.  Those that object now are overtly sexist, rather than unconsciously so from long term associations.

Similarly, though on a much larger scale, (hence the Rabbi example) the quota system could help eliminate the disability discrimination based on unconscious perception, even as the ADA can serve as a remedy for intentional discrimination and discriminatory policies.

I feel that this has worked for women Secretaries of State, and is working, even if still a work in progress, for women Rabbis.  I thus believe that it can work for people with disabilities.  I certainly hope so, because nothing else has yet.

In Solidarity: Falling off My High Horse to Embrace My Identity

I have always been suspicious of solidarity.  Solidarity always felt fake.  It always felt a little bit like privileged people assuaging guilt or boredom by taking on a shared label with their oppressed brethren.  It felt like the fallback position for those who couldn’t or wouldn’t join in opposing oppression unless they could feel themselves oppressed. In fact, whenever I was caught up in a web of solidarity, be it the ubiquitous street nod to a fellow wheelchair user or a passing Jewish greeting to a complete stranger on the Upper West Side, I always felt like a bit of an impostor.

I could nod, but as a privileged Ivy League lawyer, did I really understand the realities faced by most people with disabilities?

I know the proper call and response for every occasion in the Jewish year, and I wear a yarmulke, but as a public school kid growing up in a reform family, I never felt the mismatch with secular society that some who grew up observant struggle with.  Growing up in New England, even the anti-Semitism reported by my friends in other parts of the country was foreign to me, living, as I did,  in a region which has adopted a lot of Jewish culture as its own.

I could be, and was, sympathetic to the struggles.  I even wrote blog posts expressing gratitude for my luck at not struggling as they did, and I have worked as an advocate, especially in disability circles.  But, in my heart, it was often their struggle.  However guilty it might make me feel, I felt no right to claim that I was fighting for me.  This made the solidarity feel fake.

In recent months I have begun to realize that this was a comfortable arrogance.  More than anything, it was a delusion about my own situation.

Just this week, a Jewish couple was attacked on the Upper East Side of New York.  Over the last few years, I walked through that neighborhood many times a week with not a care in the world.

Further, as I find in the precarious world of self-employment and receiving services from Medicaid for the first time since passing the bar almost 10 years ago, I find myself falling into the half remembered shuffle of a welfare beneficiary, my life subject to the arcane and irrational requirements of the government programs on which I depend for my medical care and my personal care.  Today, I misread a letter that appeared to indicate a significant reduction in my personal care services, and I experienced a gut twisting surge of nauseated panic as I frantically tried to resolve the truth while living nightmare scenarios of how I would deal with the reduced care, since my current system is barely sufficient to meet my needs.  Thank God I had just misread the letter.

And so I come face to face with a bitter reality.  As long as I live in a world where people with disabilities either often cannot live independently at all, or at best can do so under programs with complicated and limiting rules, I am not guaranteed to live independently.  As long as I live in a world where people are attacked simply for being Jews, I am at risk, whether I live in Boston, New York, or Vienna.  The struggle of my brethren is my struggle not because of empathy, or even shared identity, but because as long as they are at risk, I am at risk.

I had been living high and mighty for a while, a New York Jew with a fancy lawyer job, paying for all my own personal care.  I may get there again.  But until all of my brethren have reached the security that I enjoy, I am not safe.

This, then, is what I have learned.  I must fight for the rights of all like me.  Further, it is imperative on me not because it is right, though surely it is, nor because I feel for others, though surely I do, but because we are all in it together.  Next time I get the nod, I will return it with full acceptance of our shared destiny, our shared struggle.  We will join together, in solidarity.

Finding Our Own Path Through the Darkness: A Reflection on the Death of Robin Williams

I didn’t know Robin Williams.  Further, in an overabundance of honesty, I will say that he wasn’t particularly my favorite anything.  I like some of his roles, I disliked others, and the two main television roles that I observed, Mork and Mindy, and The Crazy Ones both irritated me.  When I read on social media of the people lamenting the loss of his talent, I am left largely unmoved.  Plenty of people cease their professional creative lives by their 60s.  We would not be lamenting the loss of Mr. Williams talent if he had chosen to retire from public life at 60 to take up birdwatching.  I don’t even know if we would be lamenting it in quite the same way if he’d had a heart attack, or been hit by a truck.

Rather, I think the unique pain that I, and perhaps many others, feel at his death is the idea that this symbol of joy, beacon of good humor and, by all accounts, all around good guy, who read for dying children and snuck in the hospital rooms to see injured friends, was himself in so much pain that he took his own life.  A piece in Slate magazine yesterday closed by noting “Mostly I wish that his lifetime of sharing himself with us had somehow nourished him as much as it fed us all.”

A Facebook friend with whom I am not close commented that she only wished that Mr. Williams had understood how valued he was by his fans.  Frankly, I’m sure Mr. Williams did know.  By all accounts a smart man, he had won numerous awards for his talent, and sold millions of copies of his movies.  The point is that this recognition, perhaps even adulation, did not provide him the nourishment that he needed.

As someone who struggles with depression, and someone who has more than my fair share of promoters, supporters, and partisans, I empathize.  I have read descriptions of my life that have left me overwhelmed and sheepish in equal measure.  I have received such kind words that, verbose as I am, I have been bereft of speech.  I have known people to fly around the world to celebrate with me, and have once or twice been hugged by complete strangers with the simple explanation that they had heard much about me and simply had to express their affection.

And yet, as a depressive, I am often alone in my pain.  For me, the best that I can describe it is a wall or a distance that all of the love and affection in the world feels unable to breach.  I won’t pretend to know how it felt for Mr. Williams, because I think we each experience this in our own way.  (Lest anyone be worried, I am not suicidal.  As psychologists have observed, I am “lucky” enough that on my worst days, the paralyzing fear of death created by my other mental illness diagnosis, anxiety, completely overwhelms any inclination toward self-harm) I have my truth, he had his, and ultimately his led to a decision that most of us cannot fathom, and that those of us can wish we could not.

Why do I write this?  Well, if I succeed in nothing more than addressing the apparent misconception that a person suffering depression must be unaware of the value that they represent others, then I suppose that that is a public service.  More importantly, though, I seek to dimensionalize and deepen the way people look at this issue.

There is a vast toolbox in the fight against depression.  From therapy and psychopharmacology to faith, lifestyle alteration and the love and support of families friends and communities, the best combination for each person must differ, even as each person’s depression differs.  For me, social interaction, comfort, purpose and lack of stress are key factors.  For someone else, adulation and a recognition of value might be critical pieces in the ongoing fight.  Only trial and error on the part of the person with depression and attentive receptivity to preferences on the part of those wishing to help can determine which tools will be of best use in each person’s individual battles.  All we can take from the tragedy of Mr. Williams passing is that he was unable to find a combination that worked for him, and that is a tragedy.

It may be empirically possible, as the Slate article does, to observe that sharing of himself was not sufficient to leave Mr. Williams feeling fulfilled, though even then I hesitate to make any judgments about the relative value of a particular experience simply because he ultimately lost his fight.  It is surely not possible to presume that he was unaware of his value to the many who valued him greatly.  We know only that this awareness was insufficient, in his case, to give him the strength to continue the fight.

So, don’t take from my words a particular prescription.  Rather take from my words the knowledge that this is a grueling battle and the path to victory is long and uncertain.  If, as me, you suffer from depression, the best I can advise is to try to avoid giving in to a feeling of failure or hopelessness when a particular treatment or strategy does not resolve your pain.  (Far easier said than done, I know.)  The strategy that works for you may be around the corner.

If you wish to help someone who is suffering, start by jettisoning the conviction that you know what it is that they need.  The same hug that is a lifeline for one suffering person is a nonevent for another, and an unwelcome invasion of space for a third.  Rather, be willing to give whatever it is they do need as it reveals itself.  I have no magical prescriptions.  I am far from victorious in my own fight many days.  All I can offer in the wake of this tragedy is my point of view, and maybe a little bit of perspective.

Mr. Williams, the stories that are coming out about your life are truly amazing and your memory will be for a blessing.  Your pain has ended now, and, maybe, just maybe, as such a wide icon with such a successful life that nonetheless ended tragically, you will be the catalyst that starts the discussion that helps a few others find a path through their pain that leads to life.  May it be God’s will.

Caring for Those Who Care for Us: Paid Sick Leave for Personal Care Attendants

My personal care attendants are, for the most part, men and women of extraordinary dedication.  I expect that dedication, I am grateful for it, and I need it, because the work that they do is critical for my life.  As such, I often ask them not to call in unnecessarily.  Finding coverage, especially on short notice, is difficult, and going uncovered isn’t an option, unless I want to end up dead or seriously ill.  As I explain to them, this is not the type of job to which to call in just because you are having a bad day, or feeling a little off. That said, I also make it very clear that I don’t want them to work if they are truly sick.  It’s not good for me, in that I might get sick.  It’s not good for me, in that they might get more seriously sick, and become unable to help in the future.  Mostly, it’s not good for me because I find the idea of forcing a sick person to work to be inhumane, and to make a mockery of the very dedication that they show me by working.  And yet, every time it happens, we are faced with a horrible dilemma.

The lack of paid sick leave in this country is as horrible as it is nearly universal.  A brief overview of attitudes and issues can be found in this July 28 article by Washington Post columnist Catherine Rampell, celebrating a new New York City law to the contrary.  Describing the economic incentives behind the issue, Rampell says colorfully:

As you can imagine, most employees who arrive at work after puking their guts out don’t do so cheerily. They knowingly put others’ health at risk for two key reasons. One is that they can’t afford to miss a shift. The other is that they fear getting fired for the great sin of missing work because of illness. And in most of the country, businesses can fire workers for missing work, regardless of the reason.

Now, let’s stipulate that I would not fire my employees for calling in sick.  That said, I am provided a fixed number of hours by the Commonwealth of Massachusetts with which to pay personal care attendants.  Even assuming that the program allowed me to use those hours for sick time (it almost certainly does not), I would need to use those hours to hire a substitute for the sick attendant. Thus, I and my employee are stuck.  One or both of us will suffer.  Either they will come in sick, and we will both suffer, or I will mandate that they stay home, and they take a financial hit.

The New York law, which appears to be limited to employers of five employees or more, will not address this issue.  By creating a carveout broad enough for personal care, the Legislature relieves state payors of the obligation to pay this important benefit.  Thus, my New York counterparts remain powerless to provide it.  It is yet another case where people with disabilities need to oppose that which is best for them and their workers because the alternative is to do without necessary services.  A similar situation arises with regard to mandatory overtime, as I discuss in an earlier post.

In Massachusetts, we have the power to change this.  On Election Day 2014, ballot question number four will be put before the voters. I leave the full text of the question for you to peruse, but the most important feature is that the bill specifically addresses personal care.  Recognizing the importance of this category of employee, the ballot question solves this in the best way that I’ve ever seen.

It makes sick time available to all employees, though, presumably to protect small businesses, only requires paid sick time for businesses of 11 employees or more.  Then, the master stroke.

For almost all purposes, PCAs are considered employees of the consumer, and this is very important.  For this initiative, every PCA under a State program is considered an employee of a particular state department.  Not only does this meet the 11 employee threshold, but it makes it very clear that it is the State’s responsibility to provide compensation for that time.  If this measure passes, every PCA in Massachusetts will be entitled paid sick time accrued at the appropriate rate and every consumer will be certain that that pay does not reduce the number of hours that they are allowed.

If you live in Massachusetts, I encourage you to vote for this.  If you do not live in Massachusetts, but you care about justice for this important population of workers, use the link proposal as a template in advocate for it in your state.  Let us do a little more for these workers that do so much for us.

Mourning a Mentsch: The PCA Who Became My Friend

On July 29, 2014, I lost a friend.  Stefan Schack, (who would probably be protective of his age even in death) died in his early 40s.  Almost all deaths hurt those of us left behind, and tragic deaths, far too young, hurt more.  But, in the clarifying pain of that loss, and as I begin the slow transition of celebrating his life, rather than morning his death, I am forced to reflect upon the nature of our friendship, special, unique, and to my reading audience, informative. See, Stefan and I did not start out as friends.  We met the day that he interviewed to become my Personal Care Attendant.  I was taken immediately with the eloquence, energy, and gregariousness that he brought to his interview, and he was immediately my first choice for the job.  So I was disappointed when he called me a few days later and said that, upon reflection, he couldn’t take the job, because it might interfere with his day job.

Shortly thereafter, I had a weekend position open up, and before I posted it, I thought I would call the interesting fellow who had turned down the weekday shift.  Stefan accepted.

Now, Stefan was my kind of people.  I could tell immediately that we had compatible sensibilities, world views and senses of humor.  For me, I usually see this as a stern red flag.  It is important, I often tell people, to remember that your PCAs are first and foremost your employees, and you need to make sure to maintain a certain degree of detachment.  You may have to fire this person.  You may have to give them pointed feedback if they are not performing their job appropriately.  They may quit, and, trust me, when someone quits, you remember that they were not your friend.

So, I laughed with Stefan from day one.  We joked, and we turned the work of taking care of me into his much fun as possible.  (I would give nearly anything to have one photo of Stefan, wearing  one of my hand towels as a “do rag”, which he wore to keep the sweat out of his face when he was showering me.  He was particularly partial to one that I had in bright yellow and one that I had in lavender.  He said they were his colors for his gangs “the Sunnyside up’s” and “the lavender lug nuts.”)  Our mornings were pretty cool, but part of Stefan’s gift was that he never forgot that he was there to help me, to meet my needs.

Stefan began working with me as certain parts of my health were in sharp decline.  The task of caring for me was not only becoming more difficult, it was changing from week to week as doctors would offer new strategies to address mystery issues.  Unlike his weekday counterpart, Stefan did not have a healthcare background.  His primary job was in technical training at a law firm.  But, as we learned together to embrace foreign medical concepts like laxatives and enemas, the sorts of things that both of us found a little bit icky, he embraced the duties of my care with a compassion that was unmatched.  I honestly think that he was among those most dedicated to finding some way to recapture my quality of life that was slipping away.

And that was the primary nature of much of our relationship.  Almost all of our interactions were paid, and frankly, it would not have occurred to me task for free help from someone who had come to me in part to improve his economic situation.  Yet, in the course of that paid work, his compassion and enthusiasm from my care was incredible.

As was his concern for my well-being.  Stefan would drop almost anything to come to me if I was in need.  Those of us that rely on personal care live on a bit of a teeter totter.  When our care is good, we can achieve the same heights as anybody else.  But that success balances on the whims of the individuals that we rely on to keep us functioning.  Part of mitigating that is hiring good people, but another part of it, given that there will always be people that let you down and unforeseen circumstances, is to have a few people that you know you can count on when everything else goes to hell.  From 2011 through 2014, Stefan served in that role for me, competently managing to protect enough of his time to see to his own needs while never leaving me to feel that mine might go unmet.

Somehow, over the course of this unflagging dedication, we became friends.  Some of this is because of the endless hours spent laughing, joking, and dreaming of the future while we were doing the work of my care.  Some of it is because of the mutual emotional support that we provided each other through life changes, especially as he helped me come to terms with the end of my engagement.  Some of it is because we were just two compatible people.  But a big part was, how could you not come to feel close to someone that takes such good care of you?

At the end of the day, my care was at the center of our friendship.  Stefan was a self-proclaimed foodie, but we rarely ate together.  Stefan was a wine aficionado, but I believe we never once drank together.  I don’t think I ever met one of his friends, and he only met mine if they were coming to stay in my house while he was at work.  It’s true that, in those precious moments of care, we shared many a hope and dream, but always within that structure.

And so it is fitting that my last face-to-face interaction with Stefan was as he helped me to pack my apartment, and saw me off to my new life in Boston.  It is also fitting that the first time that he ever did anything for me for free was when he cleaned up my apartment after my departure and returned my Verizon equipment.  See, our relationship was transitioning, and it was no longer important to maintain that structure.

I was leaving New York.  Stefan wasn’t going to be my caregiver anymore, and I think we were both looking forward to building a new more social kind of friendship as that role was left behind.  We were talking about a visit, this summer, and reading the various remembrances that others have of Stefan, I bitterly resent that we have missed the opportunity to build that new, next kind of friendship, around bars, parties, and urban landscapes.

And yet, I am grateful to Stefan.  Not only for the friendship and peace of mind that he provided over those years, but for demonstrating to me just how it is that one can maintain an effective friendship inside of a truly professional care relationship.

I have had a few other caregivers become friends.  Usually it was because the actual professional part of our relationship didn’t last very long.  Or because of truly unique roles.  In one case it was someone that I quickly came to view as a brother, (his kids now call me Uncle Matan) in another someone to whom I still refer as a second mother.  What Stefan showed me is a model for a friendship that works inside of the care relationship, by never losing sight of three things: first, the primary purpose of the interactions remains my care; second, I am requesting labor of this friend and should be prepared to compensate them just as we all expect to be compensated for our professions; and third, that, friendship aside, Stefan understood the importance of drawing boundaries, of understanding that our friendship did not mean that he could compromise himself for my care any more than one would compromise oneself for any other job.

These are the three traps into which consumer/PCA friendships can fall, which will usually destroy both relationships, professional and friendly.  Often, a PCA who becomes a friend can forget that there is a job to do and that their “friend” is still an employer with expectations that their needs will be met.  This can often lead to explosive partings.  The other two risks are paired, that the line between favors and shifts might blur, and ultimately become exploitive of the PCA friend, or that the PCA friend will become so committed to helping the consumer friend that they neglect their own needs.  Either one will destroy a friendship in short order.

Somehow, Stefan managed to navigate all three and become a true friend.  It created a strong basis that we thought would carry us for years to come.  I can only attribute this magnificent balance to the superb human being that he was.

And so, my friend Stefan, for whom I am grieving, not only made my life immeasurably better by the care and friendship that he provided.  He showed me a model, however rare, of the way for true friendship to grow.

In a week that has seen much PCA drama for me, I don’t know whether that balance was a once-in-a-lifetime thing.  I hope not.  I know that if I find it again, I will see and hear echoes of Stefan, the PCA who became my friend.

May his memory be for a blessing.

The family has requested that in lieu of flowers, a donation be made to either the American Heart Association or to Housing Works (NYC) in Stefan's honor.

Building an Inclusive Jewish Community

My friend Rabbi Micah Streiffer provides two resources on Jewish Inclusion

You Make That Look Easy: The Immense Effort behind Effortlessness

I recently took one of the endless string of Facebook quizzes that are circulating these days, analyzing the type of person that I must have been in high school.  I took the quiz, and up popped a picture of Mark-Paul Gosselaar, in his iconic role as Zack Morris on Saved by the Bell, as the quiz labeled me “preppie” and told me that I appeared “effortlessly put together” but in fact spent significant time and my appearance.

I will leave to wiser souls the question of how “put together” I do or do not appear, but the effortless got me to thinking.  Not only do I put substantial effort into my appearance, but the end result is often completely out of my control. 

I control my hiring, and the instruction of my assistants.  Certainly, I choose my stylist and my manicurist, luxuries I find necessary to maintain a professional affect, but at the end of the day, the amount of effort that a particular individual is willing to put into brushing my hair, or tying my tie, or even tucking my shirt, is outside of my daily control.  I can fire a consistent non-performer, and I can instruct someone who doesn’t appear to know what they are doing, but, on any given day, my appearance may be completely beyond my control.

Nor does this lack of control extend merely to my personal appearance.  As I have written about elsewhere, this spring I had the unique joy of hosting a group in the Hebrew College Eser program.  Because I had very competent care at the time, I am pleased to say that I was able to have the house swept and the bathroom cleaned before each of the 10 Thursdays.  On any day though, had I experienced a problem with my morning care, it is possible, or even likely, that I would’ve been hosting 16 people in a dirty apartment.

Now, I take steps to prepare for these issues.  When I found that my New York morning staff simply was not able to help me achieve the proper look, I found colleagues at my law firm who could help me tie my tie.  When other dressing deficiencies created actual discomfort, I found friends and colleagues willing to almost completely rearrange my clothes in the firm bathroom if needed.  (My immense gratitude to my Kramer Levin friends, you will never know quite how much that meant.)  This Spring, I had my weekend care attendant, who doesn’t work until the evenings during the week, standing by for an emergency call to clean if there was a problem on a Thursday. 

But this is not a note about preparation, for the greenest person with a disability knows of the need to prepare, and the most savvy may sometimes fall short.  My point here is different.  I wrote a few weeks ago about the importance of understanding the struggle of people with disabilities, and I offer you two windows here.

Firstly, on the rare occasion that something with a friend or colleague with a disability seems a little off, you might not rush to assume that they are sloppy.  This is not to give a pass to the obligation of professionals with disabilities to appear professional, but to open up the world of possibilities a little bit.  Maybe you assume they just need a little help straightening something out, and, if you have the right relationship, maybe you tactfully offer.  ONLY IF YOU CAN DO IT TACTFULLY.

More importantly, however, for the thousands of times that you interact with someone like me, and the house is pretty good for the home of a single guy in his 30s, or I appear “effortlessly put together,” it might not her to reflect on the effort, the teamwork, and the sheer energy that goes into those simple things.  As I said in the previous post on the subject, we don’t want your pity, but a little cognizance of the struggle never hurt.

Preparing to Launch: How My Wonderful Camp Family Reached Out, Raised Me Up, and Prepared Me to Fly.

“Summer wasn't complete without hearing his laugh coming over the hill.”  – My friend Meredith, referring to me in a re-post of my “My Launch Pad” blog post.

The above flattering quote typifies the overwhelming and soul enriching response to my post about the launch pad provided to me by my inclusion that summer camp.  I was moved by the reaction of my beloved fellow alumni.

More than that, I remembered anew that inclusion is a function of people more than places, attitudes as much as actions, and feelings as much as realities.  Conversely, exclusion can result from perceiving oneself as unworthy of affection, respect, and inclusion.  I can’t speak of the inclusion of camp, and of how it nurtured my soul, developing me and preparing me to launch, without a discussion of the people.

Camps themselves are just rolling pieces of beautiful land, and camp programs so many ideas on paper, without the people that make it real.  It was in hundreds of thousands of interactions with my fellow campers and staff, the way we engaged, and the way they treated me, and laughed with me, played with me, and occasionally argued with me, that I truly felt myself brought within the community.  Collectively, and individually, each one of them was somebody without whom, to paraphrase Meredith, “summer would not be complete.”

My fellow alumni, my camp friends and family, (of which I was privileged to have my biological family be a part), the thousands of wonderful people that actually reached out to help me become the man that I am today, they are the true architects of inclusion.  If camp was my launch pad, they were my ground crew, my engineers, my fellow astronauts and mission control.

Indulge me, so that I may share a little bit about my interactions with them, and how it would help me to challenge my self-perception, and to make sure that I never excluded myself.  Individually, you will find no greater human beings.  Collectively, you will find no greater group of exemplars of the inclusion that we all want to practice.

An aside: I will only be using first names in these stories.  I have chosen to share my experiences that some might enjoy and others might learn, but, a similar decision would be for each of them to make.  Also, had I a book and not a blog, and a memory like a computer, I would still have trouble recounting all of the wonderful people in my camp life.  This is not even an attempt to do that, but rather to use a few select people to illustrate the incredible collective role of these wonderful human beings in my inclusion experience.  (Special mention to David Friedman and Eve Rudin Kleinman, the individuals at Eisner and Kutz respectively who had overall responsibility for my inclusion.)

The first camp person I remember is Ilana.  We were both camp babies at Eisner camp, and, being similar in age, we were childhood playmates in the days when we were too young for formal programming.  As I look back at my life, she must have been my first able-bodied playmate (my only segregated educational experience was my nursery school, a delightful program for its time at United Cerebral Palsy in Connecticut.)

Three decades, disparate lives, and in her case marriage to another treasured friend of mine, Danny, and children, have long ago pushed our paths apart, and these days I learn about her life from Facebook status updates.  Still, I haven’t forgotten the powerful memory of that first friend, and I haven’t forgotten that, even as an adult, on the rare occasions when we encounter each other, I’m touched by the powerful familiarity that comes with a friendship of such long-standing.  I’m also aware of how rare it was for a person with my level of disability in my generation to have that kind of friendship within able-bodied child, long before the world was beating the drum of inclusion.

Also in those early years, the warm and open camp family helped me to find my voice as a public speaker.  Various official biographical sketches will tell you that I began public speaking at age 4, and it makes for a good publicity point.  The human element that is missing from that discussion is that, in order to give a four-year-old such a platform, to envelop him in comfort, and empower him to share, requires a panoply of special people.  Here, I don’t exactly know who was involved in arranging my opportunity to speak to the whole camp at age 4, apart from my wonderful parents,but I know that, to do it, they had to instill a self confidence that remains to this day.

What’s more, quite apart from those presumably staff decision makers, there were the hundreds of Eisner campers who listened patiently to a piping four-year-old, who asked questions, whose warm interest I remember even now.  One of them, in fact, my friend Jen, still reminds me to this day of the impact of that my words had on her life.  There can be no greater affirmation than that.

As I grew through childhood, other warm campers would add to that sense of affirmation.  While I was still in day camp, (then the program for faculty children not yet of camp age) a group of girls in the youngest unit became my swim buddies.  The long passage of time has dulled my memory of all of the names, but I do remember Courtney and Stephanie among them.

On the one hand, eight-year-old girls everywhere enjoy six-year-olds, sort of like a human doll. Yet, one could easily imagine an experience where I, as the six-year-old it was a little different, was rejected or shunned.  Instead I was embraced (figuratively and literally) and, while I may have developed a bit of an ego problem, I certainly never needed to ponder if I was wanted or loved.

This lesson, learned at camp, became something of a subconscious self-affirmation.  As hard as it is, before you can really push for your own inclusion, it helps to be convinced that people want you there and may be don’t know what they’re missing yet.  This lesson, I learned from my camp family.  (My biological family is also very loving, but it’s hard to translate those lessons into dealing with the wider world.)

This lesson would continue to be reinforced by dozens of fantastic bunkmates throughout the years.  Since I cannot name them all, and I have no meaningful way to choose, I have chosen to name none of them.  Just know that you are all in my heart.

Many such lessons would be learned at the pool.  At the pool was where I would flirt for the first time, lacking some of the physical distance that my wheelchair put between me and others on land.  I won’t name names here, but I am grateful to a long list of young women whose good-natured flirtation made me feel lovable in another way, before I would fall prey in my late teens to the deep insecurities that almost all of us with disabilities have when it comes to body image, an issue about which I have written before.  Here, even the power of camp’s inclusion could not spare me the scourge of self exclusion, but I like to think that it planted seeds as I fight to break free even now.

Also at the pool, I would learn to respect my body as the only one I had, and something for which I needed to care.  I think many of us with physical disabilities tend to think of our bodies as useless at best and liabilities at worst.  We eschew exercise not out of laziness, but because it seems pointless.  I’m grateful then to Wendy. who began to teach me to use my body to swim in the pool, and to Doug, who, over my vociferous objections, made me swim every safe pool day for all of my years at camp, because he knew that my health depended on it.  I’m grateful to Jacob, to Asher, and to Stephanie, who would allow me to continue this important habit when I moved from Eisner to Kutz, with Asher and Jacob even creating an achievement award.  I have all the bad habits of a middle-aged man, but I never lost the appreciation that my body was important and that I could maintain it if I put in the effort.  I was included in being healthy.

I learned at camp that I could be included in anything if it was important enough to me.  I am grateful to Animal, and to Jen, who tried tirelessly, if in vain, to find a way that I could play the guitar when I was young, and to Andy, and Robbie, and Rosalie, each of whom would help me to realize my dreams of leading a song session, even though a guitar would always elude my grasp.  I learned that I could be included in anything, if I was willing to accept that that inclusion might look different than the way that I first envisioned.  The day that I sat next to Andy on the elevated stage in Eisner’s old Chadar Ochel (dining hall) is still one of my happiest memories.

I learned that even my needs could be a source of inclusion, rather than exclusion.  I learned it as my friendships with Eric (now Winter) and Josh deep end as they helped to meet my physical needs at Kutz when my Camp America staffers proved on equal to the task.  I learned it when Billy and Jeff and Franklin and Aaron and Scott and Scott (two different people, you know who you are), and many staff members not named here, took their own roles in my care.  And finally, I learned it, when, as pictured below, my beloved Kutz bunk mates transformed my fear of traveling camp paths alone into an honored role for them as my Secret Service guards.

And lastly, I learned, oh so painfully, just how my inclusion could impact the lives of others, in ways I might never know. In March 1992, my camp friend, Marc Erenberg was tragically killed at age 13, the victim of the drunk driver.  At three years older than me, Marc was a friend I looked up to, but not really a peer, as his sister, Robin would become.  Had you asked to me in February 1992, I would have been gratified to merely find that he remembered my name.

And yet, I remember vividly, when my father came to me, in the basement of our Connecticut home, and told me that my friend had been killed.  He didn’t stop there, though.  He told me that he had heard from the family, and that, apparently, I had made a significant impact in Marc’s life.  So important did they feel that I was to him, that they were going to support inclusion efforts at camp in his memory.

At the time, I had trouble going beyond the simple tragedy of the bad news.  I was not yet 11, and the death of a friend is a big deal.  As I came to reflect, over the years, though, I was moved and continue to be moved by the idea that my inclusion had so moved another individual on the idea of inclusion that inclusion had become a way to honor his memory.  I only wish that he had lived so we could have seen just what further inclusion he would have inspired.  I learned from this that not only could I be included, but that, regardless of my general feelings on the inspirational nature of people with disabilities, I had an obligation to let my inclusion be a catalyst for more inclusion.

When I say camp was a launch pad, I mean that it gave me the tools to fly.  Without these tools, they could ramp every door in the world, and I would not be included, because I’d be unable to let myself in.  Without learning to see myself as able to connect to those without disabilities.  Without learning to be comfortable in raising my own voice.  Without learning that I was wanted.  Without learning that my body, too, mattered.  Without learning that I could realize my dreams.  Without learning that I could contribute best to this world by fully engaging in it.  Without all of these lessons, I could not have been included in life the way I have.  Without the people mentioned above, and so many many more, I’d never have learned these lessons.

So learn some of them, if you haven’t.  Teach some of them, if you can.  Let my wonderful camp family serve as your exemplars, if you need.  And together, let’s launch everyone into a life of inclusion.

Finding My Voice: A Look Backward, A Look Forward, and A Request

Anyone who knows me will tell you that I talk a lot.  Loud, verbose, outspoken; these are adjectives that I don’t think anyone would deny me. And yet, as of May 1 of this year, despite more than two years in public office, more than 15 years of leadership positions, and well over 25 years of public speaking engagements, you would have been hard pressed to find more than the occasional public record of my thoughts and opinions on anything.

It’s not that I didn’t have them.  As a liberal New York Jewish lawyer (at least according to this conservative blogger), I have opinions about just about everything, whether I have any business talking about it notwithstanding.

It is rather that I really didn’t think that anyone would want to listen to what I had to say.  Living in the echo chamber of my liberal, Jewish, disability activist world, I really wasn’t sure that I had anything unique to offer.  Nonetheless, after years of gentle urging, I launched this blog two months ago yesterday, first at www.matankoch.svbtle.com,and then this week migrating over to WordPress, where we are right now if you are reading this.

I have been overwhelmed by the response.  In the two months that we have been live, I have received over 3000 visits, including over 1000 to WordPress this week alone.  The comments, feedback and encouragement, along with the flattering shares of those who push my words to even larger audiences have truly moved my soul.  It’s enough that I encourage other people to take a stab at blogging, if you think you might have something to say.

I have also had the opportunity to find my voice, and share my opinions on topics about which I am passionate.  My three top posts, each of which has had well over 700 views, have each allowed me to speak to an issue that I feel is timely and important.

In “Chutes and Ladders”, I got the chance to explore with you my take on the most critical policy barrier facing employment of people with disabilities.  I was truly gratified by each of you that responded that, having been previously unaware of this pressing issue, you were interested in opportunities to change the paradigm.

In “From Objects of Sympathy to Objects of Desire” I explored with you the evolution in the societal conversation around the sexuality of people with disabilities, a critical component to understanding us as fully fledged human beings.  From feedback in some disability fora where it was reposted, I know that I was lucky enough to give voice to an issue which troubles many of us that is completely hidden from many in the able-bodied world.  Then, spurred by the powerful words of my friend Ariella Barker, Ms. Wheelchair North Carolina, I examined the effect that this distorted conversation has on the body image of people with disabilities, in “It Starts in the Mirror.”

Rounding out the top three, this week I had the opportunity to share the incredible power of my camp experience with you, and the benefits that I think that camp presents to people with disabilities in, “My Launch Pad.”  I have been incredibly moved by the reminiscences and kind words of so many of my camp friends who spoke of the positive impact that my inclusion had on their lives, and I will be following up in the near future with a post focusing on the amazing human element of my camp experience, highlighting some of the thousands of people that made my experience what it is.  Even more encouraging, the post is beginning to circulate among those who work in the world of inclusion, and I would love to see the net result be that more people are afforded the opportunity that I had.

But now we come to the request.  In the two months that this blog has been active, I have written more than 30 articles.  I encourage you to check them all out, if only because many of them were written on issues about which I feel very strongly.  That said, I’m running a little low on inspiration.

I started this blog because other people felt that they had topics on which they wanted to hear my opinions.  So, I’m asking you, my readers, to tell me if there other things that you would like to hear me write about.  I’ve set up an email address, matansblogideas@gmail.com, specifically for that purpose.

Please feel free to send me articles questions or thoughts which you feel could be good potential subjects for this blog.  I may not write posts about them, as I really don’t believe in writing on any topic unless I have something worthwhile to say, but I promise to at least respond telling you that a post is on the way or explaining why I don’t feel qualified to express a particular topic.

I am gratified to have had the opportunity to start some important conversations.  I fully intend to continue.  I gratefully welcome your help and participation in this mission.

My Launch Pad: How the Micro World of Summer Camp Prepared Me for Full Inclusion in Society

"Holy sh**, that’s Matan" – Unknown shmirah (on-duty counselor) late July 1994. These were the words I heard during the execution phase of a critical step in trying to sneak me across camp, from boys’ camp to girls’ camp on the last night of the first session of Eisner Camp in 1994.

In the 80's and 90's, sneaking across camp, or raiding, was a time-honored tradition, especially on the last night.  (I understand that the camp's current management has curtailed the practice.) I like to think that I was fairly innocent in my adolescence, but there is no question that hormones were a motivating factor.

Despite being as motivated as any other 12-year-old boy, there were some significant complexities in the idea that I would participate.  The first was that sneaking across camp involved, well, sneaking, and I was in a large and very loud power wheelchair.  My friends and I never got a chance to solve the next complexity, the fact that the girls bunks were not ramped, but we had great fun dealing with the first.

It became immediately clear to our 12 and 13-year-old minds that there was no way that I was going to elude detection.  Even the most inept shmirah was not going to miss a large wheelchair barreling down the road.  We knew, however, that they could not range far from their posts.  The plan began to form.

One intrepid veteran, with many successful raids, who could thus afford to be denied one opportunity, would be intentionally caught.  While he was distracting the shmirah, I would go down the road at full speed, getting outside of the danger area before attention could be shifted.  The quote above, blurted out as I zipped down the road, was the result.

Of course, we forgot about the walkie-talkies, and of then rabbinical student now Rabbi Matt Gewirtz who was driving the super shmirah van.  Matt caught up to me about a thousand feet later, and ordered me home.

I began, but as soon as the van was out of sight I resumed my trek across camp.  As I crested the hill into girls’ camp, Matt, who was sort of an older brother figure to me that summer, came up behind me again in the van.  This time, he tailed me in the van all the way home.

This was not my only raiding experience, but it was by far the best story, and it exemplifies what camp was for me.  But let’s back up.

I grew up in small-town Connecticut.  Though my parents were strong proponents of full inclusion for their children with disabilities, I faced the twin practical barriers of access and transportation for nearly everything that I did or wanted to do.  My parents did not own a wheelchair van, and none of my friends’ homes were wheelchair accessible, nor were most of the other social venues for adolescents in our small-town.

At school, the educational and emotional blessing of having the incredible Carol Lemire as my one-on-one was paired with the unfortunate chilling effect of the idea that wherever I was, the watchful eye of an adult was never far behind, limiting constructive mischief opportunities.  I wouldn’t trade what Carol has brought to my life for anything, and I have come to think of her as a second mother, but school was not quite the unfettered laboratory of exploration that it might be for other people.

But, every summer, from infancy through age 18, I was at summer camp, most of those years at the Union for Reform Judaism’s Joseph Eisner Camp Institute for Living Judaism, where my parents were on faculty and where the above story takes place.  (Honorable mention to Camp Hemlocks in Connecticut, Camp Oakhurst in New Jersey, and the URJ Kutz Camp/NFTY Leadership Academy in Warwick New York for rounding out the 18 summers.)

My inclusion at camp was a rough and ready thing.  To put things in historical perspective, the ADA was signed by the first President Bush while I was in my second summer as a camper, and would not apply to any kind of Summer camp until three years later.  (Arguably, the First Amendment means that it still doesn’t apply to Jewish camps, but my focus is on where the understandings of the world were, not legal obligations.)  At the time, I was the only wheelchair user at camp.

Because it was rough and ready, with no blueprint, no past experience, and certainly no specialized services available, my inclusion was just that.  Full inclusion.  I was included in functionally all of the substantive activities available to another camper my age.

I swam in the pool every day.  They would slap a new ramp every summer on an appropriate boy’s cabin for my age group, and I would live there.  When it became clear that scrubbing the sinks was the only cabin cleanup task of which I was physically capable, that unenviable job became mine every day.  Each program, each sport, each song session, the presumption was that I would participate, and the creative college students running everything but their imaginations run free as to how that would work.  And it did.  There is almost no camp experience that I haven’t done.  I have danced at dances, acted in the Camp shows, and even once had my nails painted in a battle of the sexes.  (Let me tell you, I don’t look half bad in bright red nail polish, though it’s not my style choice today.)

But that is only a small part of the value.  If you recall my discussions of home, the biggest challenges to my social inclusion where transportation and access.  Camp, however, was its own little world.  Transportation lost its meaning when we all lived in a 600 acre Village.

As for access, when faced with a finite number of buildings that made up the camp social community, Carl, the wonderful camp maintenance man who had a wife in a wheelchair, built ramps to every camp building.

Even better, my ubiquitous escorts were cool twenty-year old guys who had no responsibility to enforce the rules.  (My most well-known assistant, my still dear friend Martin Smith, even helped me go raiding once.)  Here, my opportunities were the same as everyone else’s.

Then there were the differences in the community, and my human interactions.  My fellow campers lived with me, ate with me, swam and showered with me.  Anyone who has ever been the camp knows the depth of connection that that fosters.  In that depth of connection, it’s amazing how the separating otherness of disability falls away.  It wasn’t Utopia, and we had all the problems of a group of 500 kids 8 to 15 under the supervision of 150 kids 18 to 20, but it was pretty damn good.

It is perhaps no surprise then that it is camp where I had my first kiss, and my first heartbreak.  It is camp where I got an entire childhoods worth of bruises and tumbles, and the little triumphs that tend to follow soon after.  It is camp where I saw my first adult magazine, played my first card game, and broke my first curfew.  And, as described above, it was camp where I got the indescribable experience of raiding.

Since I could hang out with the other kids, camp was also the first place I encountered the Beatles, Billy Joel, and Simon and Garfunkel.  It was the first place I was surrounded by Phish Heads and Dead Heads, and the first place that I got to sing with friends as they jammed on ubiquitous acoustic guitars.  Many who know me now understand that each of these are significant parts of my current identity, but, in the pre-Internet world, I would have not found any of them sitting in my home in New Milford Connecticut.

The difference and social experience was also profound.  I think that I was well liked in my home town growing up, but I was always a little separate, no one knew me that well.  At camp, I was popular.  I had friends, acquaintances, and that loose construct we call “a crowd.”  At camp, I learned the social skills which would serve me well when I got to college and the real world and, for the first time, had year-round experiences with easy access to my peers.  This is, perhaps, a sensation experienced by many summer campers, but that doesn’t change its value to me.

Camp was also my first experience at independent living.  My assistants, especially Martin, were very clear that they were there to help me with my disability needs, but not to direct my life or my choices.  I had counselors for that, like everybody else, and the requisite independence that all campers experience.  So, simultaneously, I got to learn to make my own choices and the important lesson of how to comfortably accept the care of professionals not in your family.  Both of these are critical skills for someone with my needs to learn in order to live independently, and it was in the relatively safe, supportive environment of camp where I got to test these ideas for the first time.

This, then, was camp for me.  Like many Jewish children, I found it a nourishing experience, fostering a lifelong connection to Judaism and the Jewish people.  Beyond that, though, it was the place where I got to develop into a full-fledged human being.  Looking back on my life, I can’t think of a single social developmental milestone which happened for me somewhere other than camp.

This is not to say that camp is a panacea for socially isolated people with disabilities.  It is critical to my success that I grew up there.  My experience would no doubt have been different had I first arrived at camp a teenager that had never been included in a broader social world.  In fact, as a professional, I have encountered less than successful situations where just that was tried.  Further, though somewhat socially isolated, I was always included with my nondisabled peer group for education, and I have no doubt that that gave me tools which helped me to succeed at camp.

That said, for those with the basic tools, I think that camp can be in incredible opportunity to broaden one social development.

A key caution for anyone thinking to pursue this option.  Camp was only successful for me because I was allowed to have the same experiences as any other camper.  This meant that I was not bubble wrapped, but was able to get a few bumps and bruises.  Most importantly, it meant that I was not chaperoned, any more than any other camper.

As I mentioned, my assistants were cool 20- somethings with a clear idea of their role.  Further, when my parents, as camp faculty, were informed of my mischievous deeds, they made it very clear to those conveying the message that they were just happy that I was having the same experience as any other camper, and that if whatever I was doing would not normally necessitate a call home, then they didn’t need to know.  If you make camp as isolated and protective as the larger world, you will have no better results than the larger world.

But, done right, camp can be a launch pad, and for me was perhaps the key launch pad to help me find my current integrated place in the world.

Finding Serenity in Disability: What I Learned from Al-Anon

Some time ago, as I was grappling with some relationships in my life, I had the occasion to find myself in some Al-Anon meetings.  To this day, I would have trouble explaining precisely why I found them to be a good fit, but I did. Like most in our society, I've had some significant experiences with people with various addictions, but, no one of them well explains why I so resonated with the teachings of a group designed for individuals whose lives been affected by the addictions of their relatives or significant others.

Maybe it is that the teachings of support and serenity found within the 12-step programs are broadly applicable to the human experience.

Or maybe, just maybe it’s that the phenomena of disability can be very similar to the phenomena not of being an addict, but of being irrevocably affected by someone else’s addiction.  I’d like to explore that idea.

There are three areas that I would like to explore.  The mental exercise that I find in the first three of the 12-steps, the general idea of sharing experience, strength and hope, and the notion of talking things out with a buddy.

As taken from the Massachusetts Al-Anon website, the first three steps are:

1. We admitted we were powerless over alcohol - that our lives had become unmanageable.

2.  Came to believe that a Power greater than ourselves could restore us to sanity.

3.  Made a decision to turn our will and our lives over to the care of God as we understood Him.

As I came to understand these steps, the first step was acknowledging that the actions of the addict in your life were outside of your control, as were many of your preprogrammed reactions when you became too focused on those reactions, and that focusing all of your emotional energy on controlling them had rendered life unlivable.

The second step for me came to symbolize turning over.  Turning over did not mean that I was necessarily confident that a benign higher power would solve my problems.  Rather it meant that I could turn those problems over, cease a useless focus on them, and be restored to the sanity that would allow me to focus on all of the things in my life that were within my control.  Whether or not there was another being to pick them up was functionally irrelevant, since either way there was nothing that I could do.

And, since talk is cheap, the third step is actually to do it.

How do I translate this to disability?  Well, anyone with a disability understands powerlessness.  I am powerless to change the fact that on any given day my stomach may choose to put me in horrific discomfort.  I am powerless to change the fact that without another human being, most of the basic activities of my daily living simply can’t happen.  I am powerless to change the fact that, when you are relying on another human being, no matter how good or how dedicated, occasionally something will come up in their life that will create a problem with yours.

I used to spend a lot of time of obsessing about these issues.  Even when everything was good, I was waiting for the next inevitable crisis, the crippling stomachache or the sudden quitting of a once reliable care attendant.  Sometimes, I would be so emotionally distraught by the certainty of an impending problem that I would lack the energy to set up the very backup systems needed to avoid the problem.  But, really, I was powerless to effect the capriciousness of other people’s lives.

In that context, turning it over meant that, after doing everything in my control, whether eating the right foods, hiring the best people, treating them well, or having backup systems, I needed to stop worrying about the inevitable rough times.  Knowing they would come, I needed to accept that either through my own ingenuity, the kindness of others, or, if you are so inclined, the Grace of God, I would find my way through them, but that my attempts to endlessly prevent them were both meaningless and self-destructive.

A day with good care or good health is a blessing, and one in which I can do many things to improve my life, but only if I leave worrying about the impending next crisis to God, the universe, quantum phenomena or blind chance, and focus on doing what I can to have the best life that I can.  This is turning it over.  I can only speak to my own experience, but I believe it applies to any of the phenomena of disability that are out of our control, once we’ve done all with our power to prepare.  Turn it over and find some serenity.

The second wonderful concept is what the program calls experience, strength, and hope.  Al-Anon starts from the perspective that nobody is the expert who is there to teach everybody else, but that each of your fellow group members has had an experience similar enough to yours that you may gain value in learning how they handled it.

What a message for disability.  We each have different disabilities, and even those of us that have the same experience them differently.  If I get on my lectern and give you my surefire step-by-step solution for the problems posed by your disability, I will be at best preachy and at worst completely off topic.

On the other hand, if I share with you how I handled a similar situation, you can take from that whatever is meaningful for you, using my experience in whatever way it helps as you craft the best solution for your life.  This is the experience part.

The strength and hope part is equally as important.  As I mentioned in yesterday’s post, disability can really suck sometimes.  Hearing other people’s experiences, how they got through them and that they got through them may just give you the strength and hope that you need to ride out the latest storm.  Certainly, we could all learn to do a better job sharing.

The last lesson is talking things out with a buddy.  Al-Anon recognizes that, though you may have the best answer for you, you’ll likely not get there by running around in circles in your head.  Calling someone who understands and cares.  Talking it out.  These are incredible ways to deal with life stresses.  We do this informally, on Facebook fora and listserves, but I love the idea of the formal exchange of contact information with the understanding that one expects and is ready to take that problem call when support is needed.  Disability, like any kind of adversity, can be incredibly isolating.  What a powerful thing to break up that isolation.

I don’t propose 12-step programs for disability.  I strongly resist the idea that we have anything to recover from.  That said, the system offers some incredible lessons in dealing with a difficult life and so I offer them here.  If one reader finds some serenity, it was worth it.