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  Mike Pence has already announced that the executive orders protecting LGBT Americans will be rescinded on Inauguration Day.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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Uncategorized

My Last WordPress.com Post! Join me at Igniting Inclusion

Friends and loyal followers,

When I started this blog on a different blogging site, I wasn’t really sure why I was writing it.  I knew that I had things to say, especially on the topic of disability, and that I wanted an opportunity to write them and share them, possibly with an eye towards a later book.  Mostly, I just wanted to throw some things against the wall and see what stuck.

By about six months in, my blog posts, especially some of the ones on disability and inclusion, were getting more and more popular.  I moved to WordPress so that my readers would have easy access to social media sharing, well formatted mobile content, good hyperlinking, etc.

it’s now just about a year after that, and my inclusion work has morphed from a hobby to my primary professional involvement.  I’ve started an entire speaking initiative, along with teaching and consulting, which can be found at www.matankoch.com.  Much of the material about which I speak and teach I developed on this blog, and the blog has evolved to become the voice of the initiative.

To better reflect this, and candidly to better exercise control over content and subscriber lists, I am migrating the blog to a new home at the initiative.  Among other things, the new site is ad supported, which I hope will provide some small measure of financial support for the struggling initiative.

I am thrilled, humbled and honored that more than 600 of you have chosen to follow this blog.  Since I will no longer be posting new content here, I wanted to give you the opportunity to sign up to follow the new blog.  You can sign up here.  I hope you sign up and continue our journey together.

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Uncategorized

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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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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Uncategorized

The end of the Independent Living Fund is a cut too far for a decent society

From my old friend, Paul Goldsmith :A critical issue for independent living in the UK. Are you British, tell your government not to go backwards on independence and community based supports

Goldblog

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There is a concept, introduced by the philosopher John Rawls, called the “veil of ignorance”. Writing about distributive justice (who gets what), Rawls’ argument was that the best way to ensure everyone in society were to be treated fairly would be for politicians to make decisions from behind this veil. He imagined setting up a new society, in which a decision had to be made on the distribution of income and resources, including aspects such as rewards for the richest and safety nets for the poorest. If those setting up the society and deciding on those rewards were operating behind a ‘veil of ignorance’ in that they didn’t know whether they would be those on high income or amongst the very poorest, they would make sure that however they ended up, they would be rewarded fairly or protected by an adequate safety net. You can apply this to whether they…

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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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