Disability

Making the Most of Our Mistakes: How Mechilah Can Give Us a Model to Go Forward on Inclusion

Maybe it’s because I didn’t grow up in the religious world, but I find that I often have trouble truly understanding the Jewish concept of Mechilah.  I actually spent a bunch of time reading about it yesterday as I was preparing for yesterday’s blog post, and I still can’t figure out whether the true weight of the tradition is in recognizing how we’ve harmed others and trying to make amends, or in seeking the forgiveness of those that we’ve harmed, specifically because we know that amends only go so far.  I suspect that the answer is somewhere in the middle, and that is why we see both the obligation to request, and the obligation to grant forgiveness.

I wonder if we can take this as a model for inclusion for the year.  I was reflecting this morning on the various congregations that I’ve helped to prepare in various ways this year, whom I know will be implementing things that we’ve discussed at the high holidays.  I was excited as I thought about all of the things that they will do, and momentarily perturbed as I realized that they would almost certainly not be perfect.  A week from today, and two weeks from tomorrow, there will be stories, probably at every congregation in the world, where inclusion did not happen the way we wanted.  There will be mixups, misses and unanticipated situations.

The question is not how to avoid those, because I believe that our tradition teaches us the folly of expecting perfection.  The question is rather, where do we go from here.

I’ve been in a lot of meetings where organizers are reflecting on past events, and been privy to a lot of anguished sharing sessions where participants with disabilities painfully recount things that went wrong.  Too often, the one side is busy defending the adequacy of intention, while the other side has determined that they have suffered at the hands of an organization incompetent at best and indifferent at worst.  Battle lines are drawn.  Hurts rage.

What if we did something a little different?  What if we practiced a little post high holiday Mechilah?

What if those of us in charge of organizing events were to say, “we want to hear where things did not go right.”  What if we were to then first acknowledge the painful nature of the experience for the participant that experienced it, and then have an earnest discussion about how it could be improved in the future.

What if those of us that felt excluded were to candidly share our hurt, assuming that we have a receptive audience who will show contrition.  What if we were to then do the really hard work of letting go of the pain and hurt, and offering forgiveness while we work together on a solution?

Judaism does not teach us to turn the other cheek, that sort of blanket forgiveness belongs to another faith.  Judaism does teach us that we have an obligation to forgive an individual that comes to us in true contrition, trying to act better.

If both sides practice this Mechilah, then we have a blueprint to move forward.  We’ve identified problems and solutions, and while Rosh Hashanah 5778 will no doubt still have its problems, they will be different and hopefully fewer than 5777, and each Shabbat, and each event this year will benefit from the process.

In tradition, Mechilah is about removing negative entries on the accounting of our souls (so I read).  What if, in this inclusion Mechilah, what we are doing is taking potential negative entries on the ledger of our collective and shared experience in synagogue life, and building instead credits to the ledger to make us more inclusive?  Then we might truly be sealed for a better year in the year to come, whether we believe that that is a spiritual phenomenon or not.

In closing, I hope that everyone that reads this has a wonderful experience next week and the week after.  Unfortunately, I’m reasonably certain that there will be some setbacks, and I hope we take those as an opportunity to grow our relationships, our dialogue, and our inclusion.  Shana Tova

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Teshuvah and Inclusion: What Can the Days of Awe Teach Us About How We Move from Exclusion to Inclusion for All.

I was talking to a colleague the other day about what it really means to create a dedicated plan for inclusion, and as I thought about the process, and I thought about how one of the first steps that I recommend that an organization or synagogue undertake is an inventory, like this one that I worked to develop with Combined Jewish Philanthropies in Boston while working with the Ruderman Synagogue Inclusion Project.  Maybe it’s just the time of year, but this got me thinking about Chesbon haNefesh, the accounting of the soul that Jews do in this month leading up the high holidays.

This important first step is a prerequisite to any teshuvah, to any return or repentance that we do.  Basically, we can’t really repent unless we have honestly, searchingly and unsparingly assessed who we are, the good, the bad, our strengths, weaknesses and opportunities .  After all, ultimately the standard by which we are judged is whether we were the best versions of ourselves, and it takes some self-knowledge to get there.

I was struck by the parallel of the Chesbon haNefesh and the inventory, and then I began to think about the metaphor of teshuvah as it relates to the process of moving from where we are to where we want to be on inclusion.

To me, the parallels are striking.  First, there is the idea of a searching inventory.  Second, there is the idea of actually reaching out to the people whom we wronged, and those who wronged us, understanding the situation, and asking and offering real forgiveness.  This is a prerequisite before divine forgiveness, we learn.

Similarly, I don’t care if you have the best inventory, and have downloaded every item on inclusion.  It doesn’t matter if every certifying organization in the country has told you how inclusive you are, (an analogy to forgiveness from a higher power). Until you’ve reached out to those in your own community who feel excluded, to understand the source of that exclusion, and make a commitment to try to remedy it, it is impossible to be inclusive.

Thirdly, I love the notion that the sins that we list out in one of the central prayers, the Al Chet , don’t necessarily seem inherently bad.  Some are: bribery, idolatry, hate.  Others talk about the sins that we’ve committed in speech, in eating and drinking, in business dealings and more.

It’s not that speaking, eating, drinking, or business are inherently bad.Judaism recognizes the value in all of these things. Rather, it is possible to sin while doing all of these.  What’s more, since the prayer refers to sins committed knowingly and unknowingly, the prayer recognizes that we might be going about our regular business, failing to pay sufficient attention, and sin.

I find this to be an amazingly strong parallel to our inclusion efforts.  It’s easy to look at the big sins of exclusion.  Lack of physical access.  Lack of interpreters.  God forbid, but all too common, outright discrimination against those with mental illness, or intellectual disabilities, who might act or present in ways that make us uncomfortable.

But what about our routine exclusion when we schedule an activity without thinking about how a person with a mobility impairment will get there, or when we sit at a synagogue social gathering without asking the person next to us who is deaf how to best communicate with them?  What about when we ignore the person with an intellectual disability because we don’t feel comfortable addressing them.  What about when we use language in our liturgy and choreography that makes people feel excluded, as I wrote about here?

These scenes of exclusion, the exclusion that we practice as we are doing otherwise normal things, the exclusion that we didn’t even realize we were committing, are as much a part of our inventory to remedy as the horrible examples above.  For all of these things we seek absolution, but it means that first we must truly repent and do better.

The last parallel is in the doing better.  True repentance is about more than a searching inventory, some apologies, and absolution.  It’s about making a plan to rectify the places where you sin, and commitment to learn from your past sins, to do better in the year to come, that you might be sealed for a good fate in the book of life.

That type of self-improvement isn’t easy.  It requires a plan, attention, strategies, steps, growth.  If we know that our temper was issue in a previous year (a big one for me) it’s not enough to acknowledge it, rather we must acknowledge that we are watching out for it and what our strategy is to improve it.  It’s not enough to chastise ourselves for being a little too interested in gossip only to go back to our tale telling ways before Sukkot.  The idea is to look, to plan and to take that inventory trying each day, to be better than we were the day before, so that next year when we have again fallen short, it’s a little less short, and we’ve been doing better.

The same could be said of inclusion.  It’s not enough to do an inventory.  It’s not even enough to come up with some fixes and implement them.  It’s not enough to bring in someone like me to teach for a weekend and get people thinking.  Only if you come up with a plan to address the systemic shortcomings to inclusion in your organization, and Implement it faithfully, will things be better next year than this.

So what do we do with this insight?  Yom Kippur is like a mini death from which we come back ready for new effort in the new year, committed after a month of searching, and some days of repentance.

What if we did something similar this year on inclusion?  An intense inventory, culminating in mechila, seeking and reconciling those who were wronged and making what reparations or repairs we can, followed by forgiving ourselves with a strong and purifying commitment to do better, to be reborn as an inclusive organization that learns from its past but is not held by it, so that next year’s inventory is a little better, and we continue to strive ever vigilant, ever active to be better.  When the gates of repentance close, maybe we can throw open the gates of inclusion.

So I wish you all a good and a sweet new year, a meaningful and reflective period of teshuvah, followed by a sense of renewal, and the best of sealings in the book of life.  I hope that 5777 finds us not only working on our personal shortcomings, but bringing our inclusion practices to new heights.  Thank you

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How Inclusion Helps Us Realize Our Dreams: My Visit to Greene Family Camp

“Bring your Lexus to Bruceville Texas.” 

These cheerful and yet unfamiliar words provide a perfect backdrop to my week at Greene Family Camp (GFC).  We sat in front of a campfire, with four men leading.  First, Loui Dobin, the camp’s energetic powerhouse of the director, whom I met only last year when I started my inclusion work, and yet who fits so many of the adult male archetypes from my camp childhood that I feel like I’ve known him much longer. 

Then, Loui’s son, whom I didn’t even get to meet, but who, as a lifetime camp person who has now transitioned in the professional world, I feel like I know.  On the other side, Dan, a song leader whom I just met but with whom I already feel the easy connection of a camp friendship, and Noam, one of my oldest friends, who doesn’t know the song any better than I do, but is affably playing along, like you do at camp.

This is a metaphor for the week that I’ve just finished.  Surrounded by new friends that feel like old friends, by camp fixtures that evoke all of the wonderful memories of my own safe spaces that I wrote about here and here, camp stories that though not my own feel like I could have lived them, and just enough drop ins by my old friends to tie it all together, my time at GFC really allowed me to explore how the very inclusion that I wrote about for children works for adults too.

Perhaps unsurprisingly, my original contact with GFC was about bringing my inclusion programming to the children, the staff, and and education summit for Texas youth professionals which capped off the week.  All of these things happened, and they were fabulous.  But they only tell part of the story.

As I was making my initial plans with my old friend Rabbi Ana Bonnheim, we envisioned something greater.  What if, instead of coming in for a marathon of inclusion programming as has been my custom at summer camps, I actually joined the camp family is a faculty member for a week?

I must’ve said “are you sure you can handle me for that long?” at least a dozen times.  But we decided to do it, and so, as of the first Monday of camp’s second session, I was guiding several units of campers in creating their Britot Kehillia, the governing contracts for the bunks, and by Tuesday, I was going into individual cabins to teach campers their Shiurim, or Jewish lessons.  Together we learned about the Jewish concept of Hineni, which the camp interpreted as being there for each other.  I got to watch as the campers wrestled with the ideas, embraced them and made them their own.  Slowly but surely, we formed connections, such that they invited me to their talent show on the night before I left, some of the boys wanting to put on an act specifically for my benefit.

After my inclusion program with the counselors in training, I feel like we enjoyed a strong bond, with them coming up to me at all times, for a chat, a high five, a quick connection.  Somehow, I know that I slipped some life advice in with my disability advice and I think that’s what resonated.  The feeling is mutual, as the energy and enthusiasm gave me hope for the future

I swam with kids, I ate with kids (at least one of the nights when I dined with the rising 10th graders), and I had the singular honor of being belayed on a high ropes course by a bunk full of preteen girls, delightfully chronicled here, with video below.   Someone wiser than me will have to decide whether the kids were more moved by the experience, or I was.

My incorporation into the community was more than just the campers.  Invited to the leadership team meeting because it was an honor extended to all guests, I was privileged to be able to offer some of my own perspective on the issues that the team was facing, and privileged to continue to share what little wisdom I had with the senior staff whenever the opportunity arose. 

Though I’m sure that some parts of what felt like the team’s attentive listening had more to do with the wonderful respectful people that they are than any special contribution of mine, I do feel that, at several key times, maybe I contributed a little bit.  Certainly, I felt a part of the community, driven to do what I could.

I’m very aware of the effort that went into giving me that feeling.  I’m aware of the tireless efforts of a team of senior staff, none of whom, with the exceptions of Loui and Ana, who departed before I arrived, had ever met me in person before I entered the gates, gave freely of themselves both before and during my visit to make sure that I could seamlessly integrate into a new environment. 

Whether the constant companionship, the endless offers of water to drink, or Mamtak, the GFC word for candy, to eat, or the invisible efforts evident in the fact that I was in a new place for eight days and nothing went wrong, I know how much commitment was devoted to bringing me in, and thus enabling me to give of myself to the community.  In the Reform Movement, we like to speak of audacious hospitality.  I can’t imagine a hospitality much more audacious than this.

And what did it mean for me?  As earlier blogs have chronicled, I had a truly amazing experience as a camper at the Eisner camp as a child.  Between Eisner, the URJ’s Crane Lake camp, and the URJ’s Henry S Jacobs camp, I’ve also got to experience, in some measure, what it is to be a special guest at camp, to teach the campers.

But I seldom speak of the road not taken in my life, the Rabbi that I probably would’ve been had not the realities of a young college graduate in a wheelchair made me feel that that path was unattainable, and the joy that I would’ve felt to follow in the footsteps of my father and my mother, teaching young children at camp.  This week GFC gave me an opportunity that I’ve never had before, the opportunity to participate as a full camp faculty member, to bring my knowledge and love of Judaism, not just inclusion to young Jewish minds.

This, then, is the sum benefit of my inclusion experience at GFC.  I hope that I was able to bring my Jewish knowledge and my inclusion knowledge to a whole new group of young people (and young at heart).  I hope that I was a good friend to people throughout the week, and I know that they were true friends to me.

But more than that, my wonderful inclusion at GFC, a place that, though new to me, now feels as familiar in some ways as my true spiritual home in Great Barrington, allowed me to realize get another dream.  I wrote a few years ago how camp helped me to have all the experiences of a full childhood.  It seems that the same can be true in adulthood as well.

I have returned home virtually in awe of the lengths to which I was helped to participate this week.  Truly, GFC gets to assume a place in the pantheon of treasured places in my life, right along with the camps that did so much for my childhood.

I also feel a renewed commitment to the power of inclusion, to help us give of our talents and realize our goals.  I often speak about the fact that we can’t truly appreciate the benefits of inclusion until we practice it.  We may never know to which kids I made a difference this week, but I will surely know that the difference that they made for me. 

Last week was transformative, enriching, and fulfilling at a level that my paltry words can only partially embrace, all because the GFC family is entirely sincere with the invitation to  “Come on with Me to GFC”.

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Life Worth Living: The Insidious Harm of “Me Before You”

It is with some trepidation that I dip my toe into waters that have become so roiled by so many voices, but I feel like it’s important to offer my coherent view of the insidious damage that could or will result from the film “Me Before You” a film that will be released by Warner Bros. pictures this week.

As described by attorney and writer David Bekhour in this article, the movie is about a man named Will who

“has a spinal cord injury and uses a wheelchair. True to enduring stereotypes of disability, he is angry and bitter about his circumstances. Louisa is a café-worker-turned-caregiver whose unconventional approach to life makes her almost immediately endearing. The two develop a deep love for each other that feels both inevitable and authentic.
And Will still chooses to kill himself at the hands of others. He follows through on his methodical plan to commit suicide because the rigors of life in a wheelchair simply make his a life that is not worth living.”

Now, since I shared this and a few other critical articles, some have pointed out to me that this author oversimplifies the nuance of the book upon which the movie is based (no one has seen the movie yet), in which the female protagonist spends the majority of the time trying to dissuade the male protagonist from his ultimate course.

I’m glad to hear that, and it would hold significantly more sway were this not a work of fiction.  Since this is a work of fiction, the author holds the ultimate choice on the ending.  The author could have ultimately made Will choose life, at least as of the end of the book.  (It is a choice that we each get to keep making for every day of our lives.)

I don’t want to impute motives to the author.  It could well be that the decision to die was intended as a tragic commentary on the futility of our efforts against the ceaseless pull of entropy.  I don’t really care.

The fact is that, by choosing to let the character die, author has sent the message, intentional or not, that the prospect of life in a wheelchair, even one with love, romance (not always the same thing) and material comfort, is one worthy of suicide.

The main point of the article linked above is that the vast majority of people in wheelchairs are not suicidal, and in fact take great value and joy from their lives.  That is an important message, and for those who’d like to read more about it, the link above will give you an excellent perspective.

But what about those of us who are not always so lucky. In addition to being a wheelchair user, I've lived with clinical depression for almost 20 years. While I've never been considered a severe risk for self-harm, I have, at times, been treated for suicidal ideation, a precursor of sorts.

When my mental health is good, like now, I love my life. When it's bad, I cling to it with a tenacity inspired by fear of death. At those times, I need to be surrounded by messages of the value and worth of my life. I'm sure I'm not alone.

There is a term for those of us who are feeling like our disability makes life not worth living: ill and in need of help.  The last thing that we need is a film or a book that not only reinforces that message, but plants the seed of it in the minds of the very friends and loved ones from whom we need unbridled affirmation when times are darkest.

In the grips of depression, I am categorically unable to see the value in my life as outweighing the difficulty and pain.  This dark message lives in my brain, the toxic result of neurochemistry and trauma.  At those times, I need the outside, whether my friends, fellows or art to burn through the haze and help bring me back.

At best, even if largely ignored, this movie puts one more toxic message in the world in the name of sales and cheap tears.  At worst, it provides some dimming of the light that we sometimes so desperately need.

If even one person tempers their positive message about the value of life to a person with a disability with a nagging question because of this movie, then the movie has done incalculable harm.  I respectfully urge you to protest this movie, and that outcome.

 

In my faith, we are taught that the destruction of even a single life is akin to the destruction of the world.  I don’t know if any lives will be lost from the message of this movie, but I think we can all agree that even one would be far too many.  Protest this movie, maybe save a life, and maybe save the world.

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Universal Inclusion for Lawyers: How Helping Your Client Maximize the Value of Inclusion Can Also Reduce Both Litigation Complexity and Liability

People say to me all the time, “oh, you work inclusion, and you are a lawyer, do you practice disability law?”  The answer is an emphatic no, and I want to start out by saying that nothing in this document is intended as legal advice, or in any way to substitute for consultation with counsel.

And yet, I did train as a lawyer, though I never practiced disability law, and I did study disability law, both in law school, and many years later as a disability policy expert.  It is perhaps only natural that I begin to wrestle with the question of how one informs the other.  At worst, this piece will serve no purpose to an experienced attorney, but I believe that an experienced attorney examining counseling on a disability question might benefit from a reframing of the issue.

In my employment related inclusion work, my basic thesis is simple.  Employers hire potential employees because they hope to benefit from certain skills, talents or labor potential that those employees bring to the table.  For the purposes of this calculus, the relevance of disability is the extent to which it precludes the fullest and best expression of those skills, talents or labor.

I posit, therefore, that the employer-employee negotiating process should be reimagined from “here is a disability, how do we accommodate it?”  to “how do we best capture the value from this employee that is the reason they were hired in the first place?”  Within this framework, all of a sudden no “accommodation” is off the table, if the cost benefit is right.

Throughout my legal career, my employers always started with an idea of what they were looking for, a talented lawyer.  I remember, just before I was to start my first law firm role as a mid-level associate (I had lateraled from an in-house role), I expressed some concern to the partner who had brought me in, because I knew that I was going to have trouble manipulating paper and documents to the extent that they were still relevant to a practice that was still transitioning into the digital age.

Unfazed, he said “I hired your mind, not your hands, if we need to get someone else to handle the paper we will.” 

I recommend that employers look at each employment challenge this way.  Let’s assume that you’ve hired someone because they have phenomenal coding skills.  Let’s further assume that it has always been the responsibility of each individual coder to maintain her work area, organizing papers, creating files, sorting incoming mail.

It’s perhaps a no-brainer that if you hired a coder with a manual dexterity problem, but who was gifted at computer code, and the challenge was that they couldn’t to do those organizational tasks, you would assign them to someone else.  Not only do you not want to lose them, but you probably don’t want to come up with a laborious solution where they now spend 60% of their time cleaning their desk, but, hey, you made it possible.

I picked this example on purpose, because you might readily realize that if each of your coders was spending 10% of their time on organizational tasks, and this coder would need to spend 60, you could hire one administrative individual, and not only enable this coder, but a 10% productivity boost on everybody else.  This is actually my basic concept of universal inclusion, the idea that, anything that we might provide an accommodation to a person with a disability, we should readily provide to another employee, provided that the demonstrated increase in productivity outweighs the cost of the business. 

Other examples: I use voice recognition software because I can’t type at all.  How many senior executives or law firm partners either type very slowly, or still use Dictaphones or even real-time scribes, and would have their productivity improved immeasurably if they could do as I do and have their words appear on screen.  My voice recognition suite, which is the most expensive type, with full support for legal vocabulary, costs less than $600, and that’s when not bought on sale or in bulk.  For industries outside of law or medicine, the cost is only $200.  Further, if this option is already universally available, then an individual who develops a repetitive strain injury can quickly transition. 

Similar arguments can be made for flexible schedules and commutes, if the business permits, and most other accommodations.  The whole point of the theory is that, if value can be shown, then it should be considered.  I can’t imagine an able-bodied person making the case for why they would benefit from my specialized restroom accommodations, but if they could, and their productivity would be increased more than the cost, why not?

That’s all well and good, but what does it mean for lawyers.  Again, I reiterate that this is not legal advice, but I will share that the basic framework for the employment accommodation mandate is that a person with a disability must be hired if they can perform the essential functions of the job, with or without a reasonable accommodation.  A reasonable accommodation is defined as an accommodation that does not pose an undue burden on an employer.  To determine both of these things, the law mandates a good faith negotiating process.

My approach will not eliminate lawsuits, as we all know that unhappy plaintiffs are never going away.  But, let’s explore the application of this standard if you’ve gone through my process.  First of all, by determining the talents that you’ve hired someone deliver, you’ve basically defined the essential functions of the job.  If you would readily give the function to somebody else in order to have a talented individual in the job, then it isn’t an essential function. 

If you wouldn’t, it’s worth asking the question of why not?  Maybe it’s because you haven’t embraced the process defined above to maximize value, or maybe it’s because that function really is essential to the job.  Your lawyer will help you determine that, but if you’ve thought seriously about why you’re hiring people for a particular job, you’re already halfway there.

Now, can they perform the job with or without an accommodation that does not pose an undue burden?  First, can they do the job?  If they can’t, there is your lawyer’s strategy.  Either your recruiter misidentified the talent, or, despite the two of you working together, you are unable to find a way to unlock it.  Again, if you’ve engaged in my process, you’ll know that already, and the process will have been your good faith negotiations.

Or maybe you’ve identified a strategy but rejected it.  If you rejected it because it’s unorthodox, then again you failed to embrace the process that I identified above.  The process envisions offering any accommodation which will allow an employee to contribute the talents that you are looking for, provided that the cost does not outweigh the benefits of those talents.  If, on the other hand, you’ve embraced the procedure, but found that the cost of the strategy outweighs the benefits of employing the individual, your lawyer has a strong start on the cost benefit analysis.

Litigation is uncertain.  Only your lawyer can help you navigate the ins and outs of the particular legal standards in your circuit, your state and your situation.  (In addition to the ADA, most states have their own disability law.)  That said, lawyer or client (or both), if you follow the procedures of universal inclusion, not only will you maximize the talents of your workforce, but you provided yourself with the beginning of a strong legal defense.

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Sermon Slam: Standing at Sinai

I was privileged to deliver the following in a "sermon slam" for the Jewish holiday of Shavuot last week. The holiday of Shavuot, literally translated as weeks, is celebrated 7 weeks after Passover, to celebrate the Revelation at Mount Sinai. Tradition teaches that every Jew, past, present, and future, stood together at Sinai at that moment.  It's depicted as a scary, loud moment with the mountain suspended over our heads. It is a foundational narrative of the Jewish people.   As such, we slammers were asked to remark on the idea of "Standing at Sinai" I chose to explore the experience of pervasive standing metaphors for the nonambulatory, the unsatisfying resolutions by some, and my own empowering understanding. It was well received, and I was asked to put it up here, so enjoy!  I won’t stand for it. (Tongue firmly in cheek).

Maybe I’ll be a sitdown comic. (Self-deprecating chuckle).

When asked “what do you stand for?” I miss scarcely a beat before I say “not very much.”

I’m used to joking about standing, a humor no doubt born of the alienated feelings of a little boy asked so many times to rise when he could not. I talk about standing ovations that make my neck hurt, and I wait for the drumroll, the chuckle, the moment that will make it okay.

Sometimes the discussion is more serious. Rabbis in ancient texts discussing which prayers I can’t say, rabbis in modern times discussing which devices I can’t use. All face one simple reality: I can’t stand.

I can’t stand.

Can’t stand for a minute. Can’t stand briefly. Never could, never will.

I. Can’t. Stand.

And yet we all apparently stood at Sinai. All of us past present and future stood to receive our revelation.

What does that mean for me? Was I not there? Was there no place for me who could not stand? Have I built an entire theology around a revelation where I wasn’t allowed in?

Or maybe, at that moment, I could stand. Maybe at that transcendent moment, much like the redemption prophesied by Isaiah, all disabilities were removed, and I could stand.

But what does that mean?

If I could not be me to receive revelation, can I be me and the live the covenant? Does a God that has to change me. even to talk to me, really want me?

Is there a place for me in this covenant. This revelation to the people who stand?

One thing I know to be true.

I. Can’t stand.

But wait, Can’t I stand?

Do I stand?

Is it really true that I can’t stand?

In the haze of revelation, I realize that sometimes I do stand. I remember the college party where I stood swaying in a circle my hands on one shoulder to my left and one shoulder to my right as another bore me up from behind. Some meaningless song playing as we swayed in camaraderie.

I remember dancing for the bride and groom at a wedding as again others kept me on my feet, undertaking sacred and joyous obligation

Is this how I stood at Sinai? Leaning on my Israelite brothers and sisters, on my right and on my left?

What’s more, cowering as a group, a mountain hanging above our heads, flame and sound and smoke, did we all lean a little bit on each other’s shoulders?

Did the person bearing the weight of my body for the muscles that would not, could not, take some comfort in my presence?. Did I perhaps bear the weight, a little, of one whose spirit could not stand alone?

I. Can’t. Stand.

At least, I can’t stand alone. I can’t stand without help and support. I can’t stand because I’m too weak alone. To stand for revelation, to stand at Sinai, perhaps we are all too weak to stand alone.

I leaned on you, my brother, my sister, to stand at Sinai, to have the strength to take on the covenant, but perhaps, just perhaps, you leaned on me to.

Perhaps we all stood at Sinai together because we could not have stood at Sinai alone. Maybe we can never stand alone.

Do we ever stand alone? We give thanks for our meals in groups of three, offer the rest of our prayers in groups of 10. A great sage taught his followers that each follower was part of his stairway to heaven, ending a lengthy service because one student left. Without them, he could not stand, climb, ascend.

Maybe this is why it was so important that I did stand at Sinai. Maybe mine was simply the clearest expression of an object lesson for us all.

I. Can’t. Stand.

But neither can you. Against the weight of the covenant, we stood at Sinai together because it’s the only way we could. Each of us yes, but only each of us together. Our own commitment, but leaning on each other. I stood at Sinai, because I stood with you.

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A Lesson in Embracing Inclusion from Coe College

What does it mean to truly be ready for inclusion?  I think readiness for inclusion begins with a state of mind and a commitment to grow and change.  To see this commitment, one cannot but be convinced that change is imminent, and one can truly believe it will be impressive. I had the privilege to spend a few days last week in Cedar Rapids, Iowa working with Coe College to take a good hard look at their current preparedness for welcoming people with disabilities, and to help them begin the process of thinking about how to improve.

I went in not knowing what to expect.  That I was invited was encouraging, but it was hard to know what my reception would look like.

The weeks running up to the visit fostered optimism.  It seemed that a very diverse population of stakeholders wanted meetings.  We added a public speech to the schedule, and the College began to generate media interest in my visit.  On the day that I was to fly out, as a freak snowstorm in Chicago disrupted all flights through the Midwest to Iowa, and I was minutes away from canceling my trip, but the determined Coe team found a driver, a contractor in Chicago, willing to drive all the way from Chicago to Cedar Rapids.

I arrived at Coe late at night, with care to be provided by the faculty and students of the nursing program.  Despite the extraordinarily late arrival due to my altered travel plans, and some obstacles posed by some unusual factors at the hotel, the instructor and the two students providing my evening care were able to get me cared for and in bed, with the instructor staying to greet the morning team so that things would be seamless.

I began the next day teaching a workshop that was designed to examine, challenge and evolve attitudes on students with disabilities and inclusion.  I was completely uncertain who would attend, it being open to the entire faculty and staff.  In the end, I was greeted by a group comprising almost 10% of the entire faculty and staff community, including the entire senior leadership of the college, as the college president had decided to cancel the Tuesday morning executive meeting and bring the entire executive team to my workshop.  He led a group in the breakout sessions, of which we needed four, rather than are anticipated two.

And what groups they were.  The 35 people present generated so many ideas, thoughts and concerns about students with disabilities that I almost couldn’t get through them all in the 15 minutes that I had allotted for my review of group output,  while the participants listened to student presentations.  And they were thoughtful concerns, perhaps not all couched in exactly the paradigm that I was teaching, but all generating significant interest in, and concern for inclusion.  (In point of fact, if they had been within my paradigm, then they wouldn’t have needed me.)

When we came back together to discuss their responses, they eagerly embraced the potential of the concept of universal inclusion, the notion of focusing on each student for the value that they bring as a student and reimagining the accommodation experience to be an experience where each person’s individual needs were met, regardless of medical diagnosis.

They peppered me with thoughtful questions about how they might make this a reality.  The rest of the day was spent with my doing a deep dive into the current state of inclusion at Coe.  I toured the campus, met with key stakeholders, received the combined student input from a meeting that I had missed because of the travel change, and was even treated to lunch in the college dining hall.  That evening, I spoke to the Cedar Rapids community about inclusion in employment.

Now, I will not say that my visit did not identify many potential improvement areas for inclusion, because it did.  I certainly won’t offer that the current state of inclusion at Coe is particularly a model for other schools, because they have much work to do.  To be honest, though, that isn’t particularly unusual.

What was unusual, and what impressed me more than I can say, was the incredible eagerness to make a change.  Bringing me in was a good first step, but only tells part of the story.

As I mentioned, a substantial percentage of the Coe team including the entire executive team were enthusiastic participants in my workshop.  On the student side, the enthusiasm was equally apparent.  My tour guide was inspired to completely revamp the Coe tour to make it universally inclusive, and the admissions office was receptive.  The president of the student body stopped me to say that the student Senate had funds available and that they wanted to know how they could best use those funds to promote inclusion.

At the conclusion of my trip, in a closed-door meeting with the executive team, I gave them candid blunt assessments of the next steps that they needed to take, which were met with a deep sense, from the president on down, that they intended to embrace them.  After an hour telling them the hard work they had ahead, I was met universally with gratitude and appreciation.

This, then, is the inspiration of Coe College.  I left Iowa Wednesday morning absolutely convinced that the entire Coe community was poised for a giant leap forward.  It’s entirely possible that they will leapfrog catching up in their opportunity areas right ahead to becoming an exemplar for the collegiate community.

I can’t emphasize how much this is critical to change.  The combined student, staff and faculty commitment is at least as important as the financial commitment, and vastly more important than the current number of accessible buildings on a particular campus.  I truly believe that Coe College can already be considered an exemplar.  Not an exemplar of current inclusion practices, but rather an exemplar of the choices and commitments prerequisite to meaningful change.

I am grateful to have observed it and to have participated in it, and I encourage others to embrace it.

 

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Seeking to Truly Inspire: Igniting the Fire of Ideas, Not Smothering in a Wave of Pity

So, I want to rehabilitate inspiration so that I can inspire you. I want to teach you and ignite you the fire of change, and never, ever be smothered with a wave of pity. I want to be an inspiration because I have found something worthy to share with you. This is the type of inspiration for which I think you should be looking, and to which, I think everyone, disability or no, can aspire.

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It’s Not About Me: A Universal Message of Inclusion

The strength of my message is not the specific value that I bring to the table. As a known quantity, that value is pretty accessible to those looking for it. Rather, the key is all of the priceless value, as friends contributors and professionals, lost the greater community when people with disabilities are not included.

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Remembering My Grandmother on the Sabbath of Song

Remembering My Grandmother on the Sabbath of Song

Last week, I raised my voice in full in that Sabbath of Song, in my aunt and uncle's unfamiliar synagogue. I mourn my grandmother, whose memory blesses me every day, but I think her for her wisdom and support, and I thank God for giving me the opportunity to honor her memory on the Sabbath of Song.

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Welcomed Without Asking: Making Our Communities Inclusive to All

I reject the idea that forcing people to identify is necessary or right. Certainly, at the very least it creates awkwardness and stigma. In a worst-case scenario, it gives license to exclude from a community of support simply because someone isn’t carrying the right (metaphorical) paper. I posit that a truly inclusive community would strive to broadly accept the habits and behavior of its members, without requiring an identity of disability.

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Cartographers Needed: Looking to Draw a Roadmap for Change

I believe that for the largest and most intractable problems, grander scale solutions are needed. I don’t have them, so I can’t propose them, but I’m asking for them. Join me in starting the dialogue, that together maybe we can find the answer.

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Honoring Our Families, and Ourselves: Refining the Narrative of Families of People with Disabilities

Honoring Our Families, and Ourselves: Refining the Narrative of Families of People with Disabilities

I think that the discomfort is that the narrative somehow assumes that all successful people with disabilities come from strong families. Some do, some don’t. Those who do usually appreciate their good fortune, and those who don’t have found other ways. I think then that the key is not to downplay the role of family in the success of certain people with disabilities, but to avoid fitting individual lives into a mythos in which they do not fit. See the person, not the myth.

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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.

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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.

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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?

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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.

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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.

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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 6th 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.

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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.

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