Disability, Disability Rights, Uncategorized

We Shall Overcome: Our Collective Power to Strengthen Each Other

A year ago, I transitioned my blog to www.matankoch.com/blog.  I’m aware that some of you made the transition, and some of you did not.  So important do I think this particular message that I’m posting this one to this site even though it is officially inactive.  If you would like to find my more recent work and my new work going forward, please visit the above site.

I log onto Facebook and fear is everywhere: will I lose my rights, my bodily autonomy?  Is this a prelude to the end of a steady arc that began in the days of Earl Warren, and his continued through recent Supreme Court cases and through executive orders?

Nor is this fear unjustified.  Mike Pence has already announced that the executive orders protecting LGBT Americans will be rescinded on Inauguration Day.  We have every reason to believe that Roe v. Wade will be under fire in a Supreme Court with vacancies filled by Donald Trump, and federal protection for Dreamers may soon begin to look like a nightmare.

So what are we gonna do about it?  It’s absolutely understandable that we are gripped with fear right now.  Let’s give ourselves a little time to get it under control, I say a week, Max.

Then we need to remind ourselves how we got so far.  Pres. Obama has been a luxury of sorts.  When was the last time we saw our issues championed by Executive Order?  Certainly not in the Clinton era.  Eisenhower, Kennedy, Johnson, Nixon, all presidents during times of amazing social change.  But they weren’t leading the charge.  Our predecessors marched, they occupied, they protested, they ran for office.  We don’t have protest songs because Joan Baez and Bob Dylan were bored, we have them because of the imperative of moving a generation to action.

Well my friends, we just lost the luxury that was Barack Obama.  There will be no executive orders championing our issues (quite the opposite), the solicitor general will not be an advocate for our rights in the courts, and the next Supreme Court will be unlikely to give us the next Obergefell.  That sucks.

So we’ve got to fight.  We’ve got to march and we’ve got to challenge.  We’ve got to recruit allies at every level.  Can’t win Congress because of redistricting?  Let’s take over our city councils and our state legislatures.  Can’t put our people in office, vote with our feet in the streets until those in office have no choice but to listen.  The still unfinished arc toward racial justice started with bus riders and restaurant sitters.  We had a national movement of conscience and then Congress began to act.  The rehabilitation act of 1973 was a toothless piece of paper until people with disabilities occupied federal buildings, and forced people to see our humanity.  Time to brush up our protest songs, or write new ones, and take to today’s battlegrounds, maybe marching to use restrooms that don’t match the gender of our birth, even if we identify with the gender of our birth , in solidarity with our trans brothers and sisters.  The EPA was a reaction to an environmental movement, and if a climate denier is going to be in charge, and we need to step up where the agency fails, and make it so that those that would take us off the climate cliff embrace green policies because to do otherwise would make it untenable for their business.  I was on a conference call today or someone said we have to take to the streets.  If the next four years mean that government is not the answer, and indeed we must

But even protests are not enough.  If we can’t get employment protections for LGBT brothers and sisters, then we use the awesome power of social media to boycott the businesses that take adverse employment action.  If our brothers and sisters with disabilities find themselves losing the basic services that they need to live, let our able-bodied friends lend a hand while we fight to get them back.  If immigrants are harassed on the street, form a protective circle of love and defense against the hate to show that we’ve got their back.  A cat call or physical assault on any woman should invite the defense and rebuke of us all, let none walk idly by.

On its best days, government harnesses our collective energy for the greater good.  Our government looks like it might temporarily fail us.  So we have to do is in the way that’s a little more messy, and harness ourselves.  Over 50 million people voted with us on Tuesday and more than a few of the ones that didn’t were duped, and I believe will defend their fellow Americans when the truth is known.  If our leaders won’t unite us for change then we must unite ourselves.  Too every person who justly feels afraid, let us send the message, we’ve got your back.

So here’s my perspective.  Did the fight just get harder?  No question.  If we look at the Obama years as a baseline, despair is right around the corner.  So I recommend a shift in perspective.  Pres. Obama’s leadership was an unprecedented positive deviation from the norm.  Now the barriers for change are going back to where they always were.  It’s important that we remember that this, not the Obama years is the baseline, and remember the progress made, even under presidents like Nixon and Reagan.

I can’t address some of the angst that comes with Trump.  I certainly share everyone’s fear of someone with his demonstrated temper with access to our nuclear launch codes.   And his personal social mores make me nauseous.  But Lyndon Johnson was a misogynist buffoon while feminism was rising in power, Richard Nixon was a racist, and whatever we think of the Kennedy and Clinton years from a policy perspective, none of us are going to really argue that those men demonstrated great respect for women.  They could not stand against the tide of progress, and neither will Donald Trump, because we won’t let him.  We will fight.

Compared to the last eight years, we are facing a dark time.  But we have thrived in such times before, and I choose to take the lesson that we have the tools to do so again.  We have 10 weeks to prepare to fight.   I’m gonna do everything I can to have the backs of my brothers and sisters, all figurative and literal.  Who’s with me?

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Disability

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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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

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

I am a priceless soul.  For me, the entire world was created.

Jewish tradition teaches me that this is true.  What this statement standing alone would miss, however, is that the tradition says that the same thing is true about every single human being ever created.  We are all beings of incalculable value, unlimited worth.

Some of that value may be readily apparent, in our economic contributions, our artistic creations, or those acts that we do in service of others, for example.  Others may be less tangible, the joy that a family member takes in our presence, or even momentary uplift of a fleeting smile shared with a stranger.  Whatever it is, it is uniquely in each of us.

I have begun to speak on the value of the inclusion of people with disabilities in our businesses, our social activities, our communal spaces and are places of worship.  My main message is that we do these things not because it is commanded, or even because it is right, but because of the benefits that may flow from a personal, professional, or chance encounter with an individual who has a disability.

It’s very important to me to emphasize that I’m not talking about inspiration, but real, tangible benefits.

In my rush to concretize this idea, I often use personal examples.  I speak of my own legal services for my clients, or friendly or rewarding interactions with my friends and communities.  I speak of how they have told me that benefited from my presence, and how if their social organization or workplace were not physically and programmatically accessible to me, those interactions would never have happened

An unfortunate side effect of this construct is that the focus on me might be confused with the idea that there’s something special about me or my story which justifies inclusion.  Nothing could be further from the truth, and no misunderstanding could be more counterproductive to the real point that I’m trying to teach.

Yes, I have my specific talents and value.  But so does literally everybody else.  They may have the potential to be the best professional you ever seen, the right person in the right place for a specific position of community leadership, or just, for one particular person it wouldn’t have met them otherwise, the best friend you’d ever had.

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.

I’m privileged to have been granted the speaking ability to deliver this message.  I’m privileged that my combination of delivery and examples from my life seems to help to kindle the fire and passion for this type of inclusion in my audiences.  This is why I’ve launched a campaign to help bring my message to a broader audience.

And yet, if we focus on my abilities and my story as the reason for inclusion, the discussion has failed before it ever started.

It isn’t about me.  If you’re reading this, if you’re hearing me, you know what I represent and you don’t need to practice the proactive inclusion that I proselytize to access me.  What you don’t know, and even I don’t know, is what you’re missing in all of the people who never apply for the job, or try to join the club, because they can already see that there is no way in.

It is with the excitement about these millions of unknown potential friends or employees or service providers that I hope to ignite a passion about inclusion.  Don’t include to try to get me, include so that you have access to the people that neither of us have met yet, another priceless soul, just like you and me.

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A woman in blue stands smiling with one hand on the arm of a bearded man in a wheelchair. Visibly cropped from a larger photo.
Disability, Judaism

Remembering My Grandmother on the Sabbath of Song

We buried my grandmother last week, and as I sat and grieved with my aunt and uncle in services at their synagogue this past Friday, I thought that it was terribly fitting that the first Sabbath after my grandmother’s passing was the Sabbath in which Jews read the Song of the Sea, known in Jewish tradition as the Sabbath of Song.

From a combination of hypertone and questionable talent, I can only really sing in a very loud full voice.  Anything else is a very subdued, flattened rendering of a melody, incapable of reaching a broad range of notes.  For those who pray with me regularly, you know that, in those synagogues that I choose to call home, I sing freely in that voice, confident that the command to love God with all of my heart, soul, and being requires that I sing in a way that allows me to actually pray, rather than to struggle to contain tone, missing the melody and straining to keep up.

I didn’t always do this.  I had done it as a child, but somehow, a combination of family censure and self-consciousness had slowly quieted me down as a teen.  I was told that it was rude.  I was told that it was showboating.  I was told that it was not very good, and who did I think that I was fooling?  (This assessment by my siblings may have been accurate.)  I lacked the understanding of self, let alone the self possession, to realize that working so hard to contain the voice that God had given me, and the joy that I felt raising it in prayer, was wrong.

There were many factors to learning otherwise.  I gravitated towards the more traditional Jewish world where a great premium is placed on those who sing and pray with enthusiasm, whether they do it well or not.  I learned Hasidic ideas centered on the notion that we all have our own way to pray and that, in a community, we build upon each other.  I finally learned to accept to those voices that told me that who and what I was, though different, could add to beauty.

My grandmother, with her love of music, was one of the earliest such voices.  Grandma was a talented musician in her day, and may have, at one point, been a talented singer, I don’t know.  What I do know is that by the time that she was in her 70s, and I in my teens, both of us sang in such a way that departed from the ideal.

Yet, Grandma loved the harmonies of Jewish music, and she loved sitting with me and services so that we could sing them together.  Then, at some point in my mid teens, she noticed that I had stopped raising my voice to join hers.  That I was muted, swallowing as best as I could that explosive tendency of my diaphragm, avoiding harmony, because I couldn’t even gather the range for melody at the volume at which I was singing.

She asked me why, and I demurred, and she shook her head, no doubt thinking it was some sort of teenage thing, and just told me quietly that she loved making those harmonies with me, and that I should consider bringing them back.  That quiet love, that appreciation of my sincere intent and enjoyment of what we could create together was the first quiet seed of embracing my unique voice.

I learned that from my grandmother, the idea of embracing who you are, of celebrating were you are and living life on your own terms.  In a few weeks my movement of Judaism will publish a piece where I discuss the value of people with disabilities celebrating their own voices and their own unique contributions, but today I share with you that it was my grandmother started to help me embrace my voice.

Normally, when I’m in an unfamiliar place, I retreat to the quiet, lest I be an inconsiderate presence in a place that has not yet come to know me.  I believe that there’s a difference between evolving a place for your unique voice in a community that you’re going to call home, and bulldozing into a community where you are just passing through.

Last week, though, 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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Disability, Judaism

Welcomed Without Asking: Making Our Communities Inclusive to All

I got caught up in the discussion this week based upon a fantastic blog post that I did not write, posted on the blog of the Ruderman family foundation, linked here.  When I shared it to my Facebook page, with an exhortation for those in positions of leadership to change the exclusionary dynamic about which it was written, a friend in such a leadership position took issue with the fact that the mother in the piece had not, after all, asked for changes so that her family might be included.

This point, which has a certain facial appeal, falls down, I think, when one gets into application.  It’s nice that people will respond positively when asked, but I’m deeply concerned for those who don’t or can’t ask.

What of the single mother, uncomfortable and having already faced hostility from members of the congregation, as described in the post, who is afraid to address the leadership, which, might not only be imposing, but, in so many of our synagogues. is older, and/or male?  What of the parent. beleaguered by a life filled with challenges, who comes to synagogue for spiritual and human support, and simply does not have it in themselves for one more confrontation?  What of the parent who does not even know that their child has a diagnosis, and therefore knows no buzzwords with which to demand special treatment, but is merely looking for a place where they and their child are welcome?

What of the deaf person, seeking to attend services themselves, who, in the absence of an interpreter, or at least a person willing to look at a smart phone screen, is unable to make their wishes known?  What of the person with a mobility impairment who arrives at an inaccessible front door and can’t even breach the entry to ask if there’s another pathway inside?  What of the new self advocate who does not yet know exactly how to articulate his or her needs, looking for a spiritual community of support?

In the Passover Seder, as we are going through Jewish archetypes, one of the types of Jew described is the one “who does not know how to ask.”  The Haggadah tells us to start for that child, making asking unnecessary.

I think that this is a powerful lesson for inclusion.  Inclusion should be proactive, so that asking isn’t necessary, precisely because so many people cannot ask, or at least, facing an apparently hostile environment, will depart before ever asking.

Now, this is relatively easy when we are talking about mobility access, or even putting together a core from among the congregation that knows how to sign, or training ushers to look out for other visible disabilities and offer support, but what of behavioral disabilities?

After being told of my idea that the need to ask should be removed, my friend, mentioned above, challenged the idea that any and all behavior should be acceptable to a service leader, suggesting that the community has a right to regulate the disruptive effect of apparently aberrant behavior in the absence of a request for accommodation.

I think that this idea fails precisely because it makes inclusion dependent upon disability.  Leaving aside the vagaries of misdiagnosis, and the incidence of simple failure to diagnose an unknown condition, should acceptance and inclusion really be predicated upon the ability of medical science to quantify particular behavior?  The law craves such distinctions for rights to enforcement, but do we need them as we define how to welcome?

To my mind, if a service can continue with a particular behavior ongoing, (and there’s no question that the children’s behavior in the original blog post was insufficiently disruptive to derail services), then the community norm should be to accept it whether or not it comes with a diagnosis.

Isn’t a community more inclusive if we simply accept that some children (and adults) are more comfortable rocking, whether or not identified as autistic?  Isn’t a  community more inclusive if we accept that some people do better moving rather than sitting still, without predicating our acceptance on whether or not they have been diagnosed with an attention deficit or hyperactivity?

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.

Conversely, if a particular behavior is rendering worship untenable, or dangerous, or destructive, it seems to me that the identification of a disability at the root of that behavior isn’t an argument to ignore it or blithely accept it.  Under those circumstances, the goal is to find a mutually acceptable solution.  Again, I’d like to imagine a world where we don’t predicate such a willingness to collaborate on a diagnosis, and I accept the fact that, if no accommodation is possible, not even the law as applied to secular organizations requires an organization to accept programmatic destruction simply because the root cause of a person’s need is a disability.

My broad point is that the identification of a disability should not be the prerequisite for being welcomed into our community, even for those who present differently than some norm.  Not only would such a requirement turn certain people away at the door, and penalize others for being unaware of diagnoses, it adds an unnecessary burden to the already complex life of even those who would surely be granted accommodation on request.

If, instead, we make our communities as broadly welcoming and accessible as possible, we turn them into the places of love and support that we’ve always held them out to be.  It’s a sort of universal design for an accepting and inclusive congregation.  Yes, it allows people with disabilities and their parents to access our communities, but it also makes our communities open to the widest numbers of our potential fellow children of Israel, whether or not they fit these designations.

I invite all of you, clergy, lay leaders, and fellow community members to reimagine our environments from the ground up to include, rather than exclude.  Let’s strive for a baseline that accepts a broad range of humans, rather than reflexively excluding those acting somewhat differently than we.  Maybe then we can begin to find true inclusion.

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Disability, Disability Rights

Cartographers Needed: Looking to Draw a Roadmap for Change

I have not yet seen the movie, Selma, but there has already been plenty of controversy in the press, including some interesting comments by Oprah Winfrey regarding the current protest movement.  Recently, the Washington Post reports on a People Magazine interview where she said of the movement, “’I think it’s wonderful to march and to protest and it’s wonderful to see all across the country, people doing it,” she said in a video interview posted Thursday on the magazine’s Web site. “But what I’m looking for is some kind of leadership to come out of this to say, ‘This is what we want. This is what we want. This is what has to change, and these are the steps that we need to take to make these changes, and this is what we’re willing to do to get it.’”  See the Post article linking to the People article.

I am singularly unqualified to speak to the agenda of this movement, and whether it indeed lacks these things as she asserts, but I am nonetheless moved by Oprah’s basic point that a diffuse spirit of protest is far less effective than a targeted goal, with a detailed roadmap, and a set of tactics and strategies to advance that roadmap.

I feel that the Disability Rights movement has historically been quite good at this, just as the African-American civil rights movement was at the time of Selma.  In fact, when it comes to particular initiatives like the push for CRPD ratification or a few recent legislative initiatives, we still are.  We have goals and strategies and tactics.

I’m hoping that we can apply that energy to some of our other massive problems including unemployment, institutionalization, and massive poverty.

I think we’ve done a great job of articulating the problems.  Any educated team of disability activists could quickly come up with these and some others, and just as easily begin providing numbers to demonstrate the breadth and nature of these problems.

Where I would love to see energy and leadership is in coming up with specific, actionable, and practical solutions.  Maybe it’s just me, but I feel that even if Congress and the President were to allow me to unilaterally write laws, I don’t immediately know what laws I would write within our governing framework to solve these problems.

It’s easy enough to mandate the closing of institutions, but have we gathered models of the programs that work to find everyone appropriate community-based placement?

In theory, a person with such absolute power might consider alleviating poverty by the direct broadscale redistribution of wealth, but as a committed American capitalist, that doesn’t strike me as a viable long-term solution, let alone one that would ever be enacted by any democratically elected government.  For those of us for whom self-sufficiency through employment is not practical, have we thought through the best programs and vehicles which will provide optimum dignity and comfort?

Lastly, even if we believe, as I do, that the vast majority of poverty could be alleviated by full employment, have we come up with proven, systemic, large-scale programs that People with Disabilities to work in a way that is both meaningful and economically viable?

These questions are not rhetorical.  I believe every one of these problems is solvable, and people smarter than me may already have the solutions.  I’m asking these questions in the hope that we can gather these solutions into a centralized agenda.

Then I call upon our best political strategists.  Since we don’t run the world, (and who would want a world run by me anyway?), what is the natural coalition that could make these programs a reality?  What combination of protest and persuasion, cajoling and horsetrading, exhorting and shaming will get us the programs that we need?

From there, just as we did with the ADA, and with the Rehabilitation Act before that, I propose that we come together on a broad national scale to get it done.  I propose that we combine our individual strengths into a massive united effort for change.

I believe that individuals change the world.  I believe that each individual policy changed, each individual life improved, has value beyond measure.

And yet, 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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Disability

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

My mother loves me.  I know this because she made a specific point of leaving me a New Year’s message today with that important information.  My father loves me.  I know that because, while I haven’t heard from him today, I do hear it from him on a very regular basis.  Moreover, I know that my parents love me from their actions, whether it’s driving a few hours to see me and focusing a large portion of that visit in helping me around the house, sending me a check specifically so I could have nice food to eat around a holiday, or simply the consistent interest in my life, I know that my parents love me.

I’m pretty sure that this makes me neither entirely unique nor entirely common.  Many people have wonderful loving parents, while many, unfortunately, have parental relationships defined by abuse, neglect, or indifference.  The former are an immense leg up on the road to success regardless of circumstance, the latter can be a source of trauma, and even an obstacle to overcome in achieving life’s dreams.  Both themes can be part of the real experience of the person living them.

It’s a common thing among a certain class of disability advocates speak of the important role of the family.  It’s a fairly common tactic to speak of the effect of disability issues on the family when pushing for supports and to extol the virtues of family support in telling success stories.

Recently, I’ve seen frustration expressed with this narrative, on the part of some self advocates, who have either had negative or abusive home lives, or know someone who has.  Some were physically abused, others the target of such pervasive family ableism that only the strongest extra-familial support network could help them to see their own self-worth.  They get tired of hearing about families playing a critical role in success, because it wasn’t their story.

It seems to me that the real conflict is around mythologizing any area of disability.  At the root of any myth is that the target population is “other” and can therefore be defined categorically rather than individually.

I think it’s fairly well-established that people that come from strong supportive families (which can include many different structures, but share the common theme of love and support) have, on average, greater success than those who do not.  Certainly, those who do and achieve success often attribute some part of that success to their family.

That said, there are many other paths to success in the human experience.  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.

To me it’s something similar to the debate around what the disability community colloquially calls “inspiration porn” the horrible literary, artistic and sometimes even journalistic genre which paints the lives of people with disabilities as a great inspiration to the rest of the world.

On the one hand, I agree with the late, great Stella Young that “I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.”  Living with a disability should not be, in and of itself, considered an inspiration.

Going to the other extreme, however, Franklin Delano Roosevelt led the country out of the Great Depression, through the Great War, and, though he wouldn’t live to see it, with Social Security and the alphabet soup of depression programs, planted the seeds of Lyndon Johnson’s Great Society and even President Obama’s stimulus recovery from the Great Recession.

Looking at the life of FDR, I would be inspired by all that he managed to accomplish, whether or not he did so from a wheelchair.  That he did it from a wheelchair does inspire me, perhaps, just a little bit more.

I think the distinction is that I’m inspired by what FDR actually accomplished, including doing so with the added difficulty imposed by his disability, not by some fantastical perceptions of ordinary life transmuted into inspirational achievement simply because the person living it has a disability.  This allows me to laud his achievements, while also disapproving of several of his geopolitical decisions and even his attitude around issues of disability.  He’s a real man, who did great things but made mistakes, not a mythical paragon.

In essence, any time we embrace myths, whether uplifting or depressing, we risk losing the underlying human being.  This is terribly painful for individuals whose lives completely depart from the mythos, including the many with difficult family lives expressing discomfort over the near deification of the family role in current dialogue.

In honesty, it’s also difficult for those of us who had good family lives.  My family was and remains wonderful, and I will forever be grateful for their role in my life.  That said, when people seek advice on familial interactions where one has a child with a disability, sometimes I refer to the positive things that my family did, and sometimes I have to use our mistakes as examples of what not to do.  No family is perfect, and part of the problems with a fictional role is that it leaves no room for nuance.

Lastly, it’s destructive to the family members without disabilities.  I have at least one sibling who takes great pains to emphasize the normalcy of our sibling interactions.  This sibling will emphasize the real sibling relationship, working hard to distinguish our relationship from either the motif of long-suffering martyrdom or that of rose colored admiration.  The sibling strongly rejects any attempt to define our relationship to fit someone else’s picture, and I know that the need to do that does not come without frustration.

So I humbly offer that we should continue to emphasize the important roles of family in our advocacy, both because it’s effective, and because the contributions of those families that work so hard for their family members with disabilities should not be overlooked.  At the same time, let’s take pains to acknowledge that people with disabilities come from a wide range of real families with a wide range of experiences and try to focus our narrative on the real experiences of real people so that we, in so doing acknowledge everybody.

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Disability, Judaism

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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Disability Rights

A New Day for Disability: Bipartisan Opportunities and the Road Ahead

Yesterday was not a happy day for me.  A registered Democrat since my 18th birthday, I make no pretense of nonpartisanship, and my party, and many causes that I personally champion, from climate change to consumer protection and a woman’s right to choose, took a hit.  Such is the life of one who lives in a democracy.

I want to challenge everyone, however, not to accept that disability rights is among those causes.  Starting with the mantra that I learned on my first day as a disability activist, from my boss who had worked in George H.W. Bush’s White House, disability is not a partisan issue, or at least it shouldn’t be.

The ADA was a collaboration between Reagan appointees, Democratic and Republican Senators and members of Congress, and activists of all stripes and parties.  It was enthusiastically signed by the first President Bush.

Disability, tied up as it is in questions of human dignity, ennoblement and opportunity, is an issue where individuals of every political philosophy can find resonance.

Disability issues run the spectrum, from libertarians empathizing with Olmstead’s embrace of individual freedom and dignity, to pro-business and market activists who understand that the greatest uplift of the disability community will come from helping us to find jobs and become economically self-sufficient, to traditional progressives and traditional conservatives, both of whom should be advocating improvements to our safety net, since both philosophies emphasize that a truly great society does not allow its least fortunate members to slip through the cracks.

Most importantly, with one in five Americans being a person with a disability, disability is personal for nearly everyone, and could quickly become a life reality for anyone.  As I wrote in an earlier piece, in many ways disability is ideal for reaching across the aisle.

This is not to say that the Republican Party platform has been particularly friendly to disability issues of late.  A true repeal of the Affordable Care Act would be disastrous for people with disabilities and the fear mongering and isolationism that continues to keep the Senate from ratifying the Convention on the Rights of Persons with Disabilities is nothing short of shameful.

Rather, it is to say that there is nothing central to being a Republican that requires one to oppose these or other disability issues.  The Affordable Care Act was patterned after a Republican idea from Massachusetts, and is predicated on the idea of solving the nation’s healthcare problem using market forces, something that seems to me to be a core conservative idea.  Republican icon, former Senate Majority Leader and 1996 presidential candidate Bob Dole has been a tireless champion of the CRPD.

The purpose of this post is not to analyze the toxic Washington partisan forces that have pushed political stances coming into this election.  Both Democrats and Republicans sacrificed practicality in wars of ideology.  But that’s a topic for a political blogger, not me.

As a disability blogger, I would rather focus on the fact that the disability agenda is, for the most part, an agenda that has as much room for deeply held Republican values as it does for deeply held Democratic ones.  This is the activists’ challenge, specifically those that identify as liberal or Democrat.

Put partisanship aside.  Understand the values that drive the individual legislators with which you are dealing.  There are 535 of them, and while a few of them may be corrupt, the vast majority have foregone lucrative life opportunities because of a strong desire to serve.  If they vote differently than you would like, it’s because they believe that a different path is in the best interest of this country, not because they are craven comic book villains acting in depraved self-interest.

Sometimes, then, the goal is to persuade.  I like to think that people of conscience who are mistaken are open to thoughtful persuasion, but even this is a red herring to disability activists, I think.

Much more important is to figure out how those differing opinions and beliefs still support righteous outcomes.  I engaged in a very brief exercise above, a cursory paragraph explaining how traditionally Republican values support important disability causes.  Cursory, but not frivolous.

I really do believe that large parts of the disability agenda are perfectly consistent with conservative of ideology, and the goal of any thoughtful activist should be to realize that, flesh it out, and convey it to our legislators.  The biggest strength of the disability agenda is its universal nature.

So I challenge you to work with that.  In January, 535 men and women who want the very best for the United States of America and its citizens are going to be sworn into office.  I implore everyone to be ready to work with them, to show them that what is best for us is consistent with their deeply held values and is indeed what is best for all Americans.  This is our challenge, and I know that we can do it.

In the words of Justin Dart, himself a lifelong Republican, who broke ranks with the party only when its platform abandoned the values which I believe many of its members still hold, “Lead on!”

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