Disability, Independant Living

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

As I launch what I unabashedly hope will actually be an inspirational speaking tour, it’s important to take a minute to reflect on the type of inspiration that I actually want to be.

I don’t want to be the false, objectifying, pity masquerading as inspiration so often applied to people with disabilities.  Instead, I want to inspire you with my ideas, not my wheelchair or my life.  Let’s explore this.

The word inspiration has earned a bad reputation in disability circles, often receiving reactions that range from discomfort to disgust.  Immediately brought to mind are the genre of stories derisively referred to as inspiration porn, which can range from the abject pity parties of the Jerry Lewis telethon to seemingly more innocuous images which appear to be celebratory of the accomplishments of the person with a disability.

Though those celebratory images are well-intentioned, often they are celebrating something that is only celebrated because it was accomplished by a person with a disability.

The late, great, Stella Young explained it better than I ever could in a TED talk a few years ago.  Said Young, they

“objectify … disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person’”

Young recounts being routinely “approached by strangers wanting to tell me that they think I’m brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name.”

She teaches “those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren’t so bad for you, to put your worries into perspective.”

Stella’s whole talk is worth listening to, and can be found here.

Now, I believe Stella to be right.  This type of inspiration objectifies people, engulfs us in a wave of pity for how terrible our lives are believed to be, or at least how difficult, and congratulates us for the active living anyway, while guilting the audience with some notion that they should abandon complaining about their own problems, because at least they’re not us.

This is really horrible for everyone.  It’s horrible for the person with a disability who has become an object of pity rather than a fully realized human being, and it’s horrible for the audience member.  Just because I can’t walk doesn’t mean that you don’t have your own struggle, and pushing you because someone has judged your problems to be less severe than mine is unfair to both of us.  I have no intention of playing this game.

But I do want to inspire you.

I am devoting my life to speaking and teaching and working with people on inclusion, precisely because I believe that I can inspire you.  I can inspire you with my ideas.  I can inspire you with my vision of a radical, universal inclusion.  I can inspire you by encouraging you to think about issues completely new to you, or to evaluate issues with which you already wrestle in a completely different light.

And yes, my ideas and my abilities to see things in this way grew from my life as a person with a disability.  In all other regards, however, I want my ability to inspire you to have absolutely nothing to do with the fact that I have a disability.  I want the inspiration to be in the substance and the power of what I can teach you, and have nothing to do with the fact that I’m teaching it while sitting in a wheelchair.

I would also like to inspire you by forcing you to confront issues.  To do this, I need you to see me as a person with a disability, but also as a beneficiary of privilege rather than as an object of pity.

I want you to look at the fulfilling life that I lead and the opportunity to do the things that I want to do.  I want you to realize the degree to the ability to live that life is the direct result of benefits that I receive from the state of Massachusetts, which, in their current form, are available in no other states.  I want you to think about how my access to medical care and education, to vocational rehabilitation and economic opportunity have been critical to their life.

Then I want you to realize how few people with disabilities have access to those opportunities.  I want you to look at my life, including the value of the ideas that I share with you, and realize that they may not have the same opportunity to share their ideas because they don’t have what I have.  I want you to see that, and then I want you to be inspired to fight for it for all people with disabilities.  I am always happy to inspire people to action for justice.

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.

If you want to help enable the right kind of inspiration, visit www.gofundme.org/Matanignites.  You could also talk to your employer, your place of worship, or your social organization to see if they are interested in booking me to spread my kind of inspiration.

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Disability, General, Independant Living, Judaism, Personal Care, Sexuality and Body Image

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.

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Disability, Independant Living

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

I had lunch with a friend, also a wheelchair user, over the weekend.  Our discussion was wide-ranging, and spanned a number of hours, and somehow, amidst to the acknowledgment of the crazy roads that we’d traveled, the uncertain mortality faced by all human beings but perhaps more present to those of us who are medically different, and our goals for our lives, both in the moment and in the long term, we came to the question of inspiration.

I don’t know anyone with a disability who doesn’t feel some hostility toward the concept that we call inspiration porn.  You’ve all seen it, the stories with tear jerking quotes by brightly smiling families, the halo almost visible as an author or journalist floors us with their epic tale.  Oh the struggle.  That they even get up in the morning.  We should be so strong.  Gag.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Disability, Independant Living, Personal Care

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

I have never met a parent who did not hope to predecease their children.

A gentle decline and death at a ripe old age is the natural end of a life well lived.  Like everything else, this natural progression takes on a different meaning in the context of disability.

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

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

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

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

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

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

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

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

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

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

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

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

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

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Disability, Independant Living

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

I have a significant physical disability. I use a large wheelchair, one of my hands lacks almost any practical function and the other hovers around 70%. Not only do I require hired help for all of my activities of daily living in the morning and in the evening, I require enumerable little things all throughout the day. Despite this, I live very independently, not only navigating personal and professional worlds in Cincinnati, New York, and Boston independently, but also regularly traveling independently to Washington DC, with periodic travel to plenty of other someone random locations.

Occasionally, people, especially other people with disabilities, will ask how I arrange the extensive concessions that this lifestyle requires me to ask of others, especially the service professionals that I encounter every day. I honestly think that the answer is in a carefully crafted attitude.

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

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

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

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

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

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

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

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

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

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

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

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

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Disability, Independant Living, Law and Lawyers, Personal Care

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

Since August 1998, when I was 16 years old, I have been dependent upon a unique class of professionals for all of my physical needs. These hard working men and women were integral to my earning two Ivy League degrees, my professional success, and really anything that I have achieved since leaving my parents’ home in 1998. On the East Coast we call them Personal Care Attendants, other regions refer to them as Personal Assistants. They, together with the slightly better trained Home Health Aides and Certified Nurse’s Aides, make up the incredible corps of giving, caring individuals that facilitate the lives of countless people with disabilities in order that they can live independently.

It will surprise few who are familiar with the economic realities of this country that, demographically speaking, this population of workers tends to be only high school educated (if that) and disproportionately minority, immigrant and female. It may be more surprising that, currently, due to a companion care exemption in the regulations implementing the FLSA, these individuals are not provided with mandatory overtime in excess of 40 hours, let alone items like sick time. (Arguably, even the current exemption is over applied, but that is outside of the scope of my post.)

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

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

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

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

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

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

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

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

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

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Disability, Disability Rights, Independant Living

Guilt, Privilege, and Paying Attention

Years ago, as a young law student, I wrote the following reflection, while working to guide and supervise a plaintiff in Health Law Advocates‘ successful lawsuit to secure meaningful dental coverage for those on MassHealth. I wrote:

Guilt is not an emotion that I grant too much time. I didn’t ask to be lucky, didn’t ask to be one of the few persons with disabilities to get all of the services that I need, including “Cadillac” services like twice yearly fluoridation, twenty-four hour Personal Care Attendants, and all the Durable Medical Equipment I need. I am no less deserving than anyone else. Yet, what gives me trouble is that I am also no more deserving. “There but for the grace of God goes me.” This rings through my head as I sit at my Vocational Rehab-purchased laptop reading about the tens of thousands just like me. Just like me, but not like me

Maybe they were not uniquely “lucky” to have a disability that left them with full cognitive potential and still photogenic enough to evoke a desire to help rather than the discomfort and ostracism. Maybe their parents were not as tenacious, or as well educated, or as committed, if they were present at all. Maybe they were not blessed with a school system filled with individuals determined to find their abilities, and to help them to grow into their full potentials. Maybe they did not find

a University institutionally and individually committed to their success, complete with tens of thousands of dollars and hundreds of compassionate person-hours of expenditures. Maybe they did not find advocates and allies at every level of Social Services, people that shepherded them through the twists and turns of a system in which so many people fall through the cracks, despite best intentions. Maybe they just didn’t have my knack for being in the right place at the right time. So many maybes…

I didn’t ask for my disability, or my wonderful services, and our twenty-first century sensibility says that the corollary is that I don’t owe any more than gratitude. Like heck, I don’t! Call it God, Karma, or luck, I am where I am by a unique confluence of incredible circumstances, of love and fate and the blood sweat and tears of more good people than I will ever know.

I’m here and others are not. Guilt is not a useful emotion, but let me transmute it into a sense of obligation. Only by taking my unique position and dedicating myself to helping others conquer their maybes can I justify the effort, love, and blessing that went into giving me the life that I have.

“There but for the grace of God goes me.”

It may be true, but Judaism teaches that we are all partners in the work of perfecting our world. We are all partners, and hence must work to be the mechanism by which one more person gets where I am, and one more and one more, until the problems that I read about today are just another set of unfortunate moments in history.

If everything happens for a reason, then I thank God for the wonderful people and opportunities in my life, and pledge to take the chance they gave me to help as many others as I can. I didn’t ask to be lucky, but I am. God, help me to never lose sight of just how lucky I am. But also, help me to never be take that luck for granted, and to do it appropriate homage by using it for creating as much good for others as I can.

In the dozen years since I wrote this, much has changed. The lawsuit was won. My words were used by a wonderful Rabbi to teach us all. And, I no longer get quite get all of the wonderful services I got then. What hasn’t changed is the conviction that I am fortunate, have had the luck to avoid a much more difficult existence, and feel that that obligates me to do what I can.

Also, I’ve learned that while my lucky turns, and where they could’ve changed, are fairly obvious, any one of us could lose health, physical ability or means at any time. “There but for the grace of God goes me.”, but there but for the grace of God goes you too. I know what I’m going to do about it, but what about you?

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