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Launching a New Blog-Repurposing This Site

It is hard to reconcile the world in which we live with the world in which I launched this blog in 2014. A braggadocius, xenophobic, racist, sexist, homophobic, trans-phobic , misogynistic reality TV star, is president. Himself no doubt guilty of multiple sexual assaults, as I really wants this blog, the Republican Senate is rushing to confirm his latest Supreme Court appointee, who, whilst perhaps protected from criminality by the legal construct of reasonable doubt, has been subject to multiple, entirely credible allegations of sexual assault, who has responded to the accusations against him with a demeanor which should preclude election to the student council were he in elementary school, let alone a lifetime appointment to the highest court of the land.

Lest we forget, in this latest outrage, there are still children in cages, a Secretary of Education who does not believe in public education, let alone special education, and an Atty. Gen. who is probably not a big supporter of the post-Civil War amendments to the Constitution, let alone the Civil Rights Act that his department discharged to enforce. We have a leader with his finger on the nuclear button who does not seem to understand that nuclear weapons are unthinkable to use, and was too busy enjoying the benefits that he reaped from gaps in our cybersecurity possibly champion closing them, let alone acknowledging the Russian aggression in their use. And on, and on, and on.

At various times, my outrage has been so great that I felt that I had to speak out, and so I have penned a few articles to my professional inclusion blog which do not really belong there, so important did I feel that it was to speak up.

And then I remembered this blog, originally the omnibus blog that became my inclusion blog, before it migrated to my professional inclusion site. This blog was not originally for commercial purposes, or to grow my business, but just to share my ideas to those who might wish to listen. I realized that I had a place to share the thoughts bursting out of my head that was not my professional inclusion blog, and that it was here.

So I have renamed this site Matan’s Musings.

Matan Koch’s blog officially migrated long ago to http://www.matankoch.com/blog a long time ago, and it is been the home for new inclusion material close to three years. If following that material is the reason that you subscribed to this blog, I urge you to subscribe there. If you do not wish to follow my musings in this time of outrage, I urge you to unsubscribe here. To all, thank you for reading.

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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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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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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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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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My Father’s Voice: Stilled, but Never Silenced

I was born in 1981. The anthems of the 1960s, from “We Shall Overcome” to “The Times They are a-Changin'” would soon be replaced by “Material Girl” and “Manic Monday,” while Lyndon Johnson’s Great Society was soon to be eviscerated by Ronald Reagan’s supply side economics and deregulation.

This materialistic cacophony would not touch me, however. Rather, I am told that as I lay on a warming table on that cold November Shabbat, 11 weeks premature and struggling for life, a powerful voice enveloped me in love and song all night.  My father always said the one saving grace of that evening was that I had not yet been moved to the isolette where I would spend the next 3 months, meaning he could touch me, and sing.

I know that he sang songs of prayer and love, including, writing for me, as he and my mother did for each of their 5 children, an individualized loving musical adaptation of a traditional Jewish song (Mine came from the seder song “Baruch HaMakom”).

But I bet he also sang of the prophetic vision of a world redeemed and the overwhelming Jewish imperative to pursue justice. That’s a safe bet because these themes were so central to the soul of the man that I cannot help but be certain that he would have bequeathed them at my birth, as a living anthem against the rising self-preoccupation which would be typified by the meme, “greed is good”, by the end of the 80s.

As we encircled his deathbed three short, heart-rending weeks ago, his beloved children were the ones singing to him of peace, love, and of God’s perfected world, which he could envision so clearly, though, like all of us, never reach.

We promised to continue his work, the endless agitation for ideals which he kindled in us like a mighty flame. We assured him that, as taught by his favorite Talmuidic aphorism, it was not upon him to finish the work and we would not abstain.

And indeed we have not.  All five of us advocate strongly for causes that are important to us, and already in the short time since his passing, have returned to our advocacy work.  My older brother, for instance, has relaunched the project that he started years ago under my father’s guidance, to write a book chronicling his experience and advocacy as both a special education professional and a person with learning disabilities.

Personally, I was privileged to honor the seventh day after his passing by addressing nearly 1000 Jewish teens in an effort to ignite in them my father’s passion for progress on the issue of inclusion, typified by his membership of the CCAR’s inclusion task force. It is easy to see how that is an issue close to my own heart as well.

You can find that speech here, and it will soon be available with subtitles.

The amazing part about giving this speech was seeing the passion that it kindled in the teenage audience, many of whom I was privileged to engage with afterward.  I now understand more fully why my father was so committed to youth work as a venue for justice.  In the wake of this incredible response, I have chosen to honor his memory by working to fully embrace his vision that I make this advocacy a central focus of my life.

My father felt strongly that, despite the at times overwhelming financial hurdles that I face as a person with a disability, the community would sufficiently value my mission that, as he frequently argued, I would find the necessary financial support.

As such, and is chronicled in a previous post, I have conceded to him the posthumous win by setting up a crowdfunding campaign to ask for financial support to bring my message to a broader audience.  The campaign can be found at http://www.gofundme.com/Matanignites, and I would ask any who are willing to honor his memory by giving what you can.

It is my hope and belief that eventually my speaking and teaching will provide sufficient income to be self-sustaining. However, in order to build such a stream of income, I need to begin by taking engagements one at a time.  My hope with this campaign is to raise enough to sustain me through that process.

My father was not one who ever prioritized money over mission, and yet he was someone who understood that in order to make a difference, one must be able to take care of oneself.  I, along with my siblings, have pledged to take up his voice, in order that, though it can speak no more, it is not silenced.  If you can help me support that mission, I would be eternally grateful.

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Worth Paying For: Winning in the Fight for Inclusion by Losing My Very Last Argument with My Father

I had a long-standing argument with my late father.  He wanted me to seek funders for my inclusion work, and I was never sure what they were paying for.  I wrote a piece a while back about the importance of funding disability, and about the idea that if folks supported the work that I did, then maybe they should help to support my living costs.  I still believe every word I wrote here, but, in the wake of my father’s untimely death, I finally understand what I’m actually asking you to pay for.  I see what he saw, or at least I hope so.

A few months ago, I was approached to give the opening plenary at the biennial convention of the North American Federation of Temple Youth (NFTY).  Those who have read this blog regularly know the critical role that NFTY and the URJ camps have played in my life, and so I was honored to be asked to charge the youth on the question of inclusion.

My father had always emphasized the human imperative and potential to agitate for positive change, and he particularly saw the importance of reaching and teaching young people, which led him to be an active voice in youth programming throughout his entire rabbinate.

With this in mind, I began to work on the speech to encourage the teens to take a radical view of inclusion, an inclusion that presupposes access, both programmatic and physical, before it is ever requested.  An inclusion that simply refuses to accept the idea that some are not welcome.  Most importantly, an inclusion that understands that we include people with disabilities because of the immense value that their participation brings for us, not for the mythical “them”.

My father died suddenly a week before I was to give this speech, but I knew that the only real way that I could honor his memory was to give it anyway, and so, with a heavy heart, I arose from my house of mourning to speak, uncharacteristically without time to memorize it.  You can find my speech here, but,as it turns out that was not the exciting part.

Beginning with the questions that you see in the video, moving to informal discussions as I works to exit the auditorium, then in a breakout session with 100 of the teens the next day, I was amazed to see not only their fire, but their insight.  It’s true that I started the conversation, and, in the small group, facilitated it.

What that ideA fails to encompass is the enthusiasm, insight, experience and creativity they brought.  Between them they hashed out an incredible blueprint for new youth programming and policies to allow full participation of teens with disabilities.  Dozens of them came up to me to talk about the exciting work that they were going to do when they got home, and I have begun discussions with NFTY itself to see how the work can be facilitated.

My father was right, it’s amazing what happens when you light the fire.

In the wake of the speech, people have begun to approach me about going on the road to light the fire elsewhere, to speaking congregations and in camps, and I hope also in secular environments, to facilitate discussion and action as probably as possible.  I would like to dedicate myself to this mission.

In order to do that, I need my basic financial needs to be met for the next 12 to 18 months.

For the first time, I feel comfortable asking for it.  I finally see what my father saw about what I can accomplish if I’m freed up to do the work.  More than that, I see that this can become a self-sustaining framework.  People pay speakers and teachers, and once I have a busy enough schedule, the work will pay for rent and food, but it takes time to build up.  I think that I’m poised to do something important and now I am asking for the resources to start the process.  If you are reading and believe that you can be a part of helping me to affect this change, please visit my go fund me page, and give whatever you are able.  I have the will to bring the dream alive, and my audience has the power to make it a reality.  I’m asking you to bring us together.  Thank you.

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If It’s Not Accessible, Who Is It For?

I think that this point is important, and is the complementary counterpoint to my crowdfunding piece that so many of you read on freshly pressed. Hopefully we can find a balance, pooling resources so that valuable voices are not silenced for true financial limitations, while encouraging individuals and organizations to reflect their values with their pocketbooks. Thank you, Sam Dylan Finch, for writing this insightful piece.

Let's Queer Things Up!

Since going viral last October, the invitations to speak at conferences and other events have slowly but surely started trickling in.

At first, it was thrilling. I’ve always wanted to travel and talk about my experiences, because I still believe that face-to-face interaction does something that my words on the screen simply can’t. I wanted people to put a human face to the very important issues that I’ve been talking about.

I wanted people to realize that trans people exist, trans people with bipolar no less, and that I am not only surviving, but thriving in a world that often limits us.

But just as quickly as the invitations came in, they were being revoked. Not because I wasn’t capable of speaking, or that the engagement was cancelled – time after time, the conference and workshop invitations were being withdrawn because I had asked for disability accommodations.

As a…

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A Little Fire for the Engine of Change: The Driving Power of Love and Outrage

I’m not exactly sure when I began to view emotion as an obstacle to my advocacy.  When did it become the case that I viewed myself as a less effective advocate if I was “too emotional?”  When did a potential ally, or fellow advocate become someone that I couldn’t work with because he or she “felt too strongly” about an issue?

I’m not sure when, but I think that I understand why.  Most of the important issues on which I advocate, from personal care and healthcare, to employment and consumer strength, have rational, policy-based solutions.

Some emotions, most notably, pity, fear, bitterness, or revulsion, really get in the way of these solutions.  Pity or revulsion can devalue the very individuals whose needs are most at stake, while fear and bitterness can alienate potential allies before ever extending a hand.

And yet, passion is the strongest human motivator.  In my hurry to dismiss destructive emotion, I’m beginning to believe that I have been too quick to dismiss the important role of constructive emotion in bringing change.  Laws can change individual behaviors, but it is hearts that change the world.

So here is my emotional prescription: I invite advocates for inclusion to embrace the twin emotions of love and outrage.

This combination, and the idea of productive outrage, might be counterintuitive to some, but bear with me.  Let’s start with love.

Love is an incredible driver of proactive inclusion.

Years ago, as my sister was searching for an apartment in Brooklyn, I was living in Cincinnati Ohio, with little ability to afford plane tickets.  Though not eventually successful, my sister searched tirelessly for an accessible apartment that she could afford.  I did not yet live nearby, and it was unlikely that I was can be a regular visitor, but it was important to her that I could get into her house, if the opportunity arose.

Similarly, upon moving into their new home, my brother and sister-in-law immediately undertook, at significant expense, to build a ramp.  This, even though when we had lived a mere 20 blocks apart, our busy lives had allowed for a visit perhaps once every six months.  Again, it was important to them that I could get into their home, whether or not there were immediate plans for me to visit.

Most recently, my cousin bought a home in Key West Florida, and before she had shared the news of the purchase publicly, she called me delighted to share that the home was accessible and that I could visit whenever I wanted.  Given both of our financial situations, we expect that this visit is a long way off, but still I was in her mind when she purchased her home.

The common theme here is not particularly complicated.  My siblings and my cousin love me.  They want the opportunity for me to be a part of their lives to be built in, not addressed only when there is an occasion.

This type of love drives a lot of the allies of the disability movement.  Parents who want access and dignity for their children, and children who want to be able to share their world with their parents.  Be it these, or siblings, or spouses, or dear friends, it seems to me that almost every time that I meet an inclusion advocate who is not themselves a person with a disability, their advocacy is born of some connection of love to a person with a disability.

Instead of running away from that connection, I propose to grow it.

The Judeo-Christian Bible commands us to love our neighbors as ourselves. Endless reams of paper, or bits and bytes in today’s age, have been spilled on the meaning of this injunction, and I don’t propose to unpack it today, especially since my thesis is not a religious one.  Rather I propose to paraphrase it.  I propose to suggest that we extend some measure of the love that we would extend to the friends and family described above to our community of neighbors.

This is a hard prescription.  I am essentially asking for each person to embrace a love for a hypothetical person that you haven’t met, and to make your places and programs inclusive because you love them and want them participating in society, even though you don’t yet know who they are.

Certainly, it’s difficult, which is why I presume that the ancient moral code enjoins it.  It’s unnecessary to order those things which people do naturally.  At first, it might even seem nonsensical.  And yet, it’s not really so much of a stretch in this instance.

We, in the disability world, acknowledge that disability is a club that anyone can join at any time, and that everyone, should they be privileged to live long enough, will join.  Today, we talk about the hypothetical stranger.  Tomorrow, it may be your aging parent, or a beloved sibling or spouse with sudden illness or injury, or your newborn, beloved and beautiful, while diagnosed with something making her different.

I guarantee you that love will drive you then, but maybe, just maybe, we can try to get there first, embracing some empathy before it becomes personal.  And maybe, then we can begin to embrace people before they ask.

From this context of love, I think it becomes easier to understand what I mean by outrage.  If you love someone, and the door is figuratively or literally slammed in their face, whether by physical sensory or intellectual access, or simply a lack of opportunity, it is not a stretch to think that you would be outraged.  Certainly, you would be outraged if they were subject to violence, or brutality.

And yet, every day the persistent exclusion of people with disabilities is met with resignation, sadness and regret.  Even I can only summon outrage when a person with a disability is murdered by a parent or caregiver, as happened so recently to London McCabe, or strangled by police, as in the recent case of Robert Ethan Saylor.  It is much more common to react with grief than outrage

I’ll be releasing another piece on this specific idea within the next few days, fully extolling the virtues of outrage, but for now I’d like to focus on outrage is the flipside of love.  It is hard to be outraged at the exclusion of the faceless other, but easy to be outraged at the exclusion of one whom we love.

The bridge, then, is to try to empathize with the excluded other, to love them, or at least realize how easily they could be one of our loved ones.  I question the people who claim to fight for justice simply because of an intellectual conviction that it is the right thing.  I think that the best lawyers for social justice recognize that the people for whom they advocate are simply themselves, if life had gone a little differently.  “There, but for the grace of God, goes me.”

This empathetic outrage, as I will argue for more fully in the next piece, is critical to a true push for change.  Not for counterproductive bitterness, or for blame for the artifacts of exclusion which are so often left over from an earlier time, but for urgency.

The things about which we are sad, we hope to someday change.  The things about which we are outraged, we will not rest until we find a way to change.  With so much work to be done, we need love, with its accompanying outrage, to fuel the engine of practical change.

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Crowdfunding Disability: Pay for the Change That You Want to See in the World

From those studying the medicinal benefits of centipede venom to those researching the existence of life bearing extrasolar moons, scientists have turned to crowdfunding for issues which have captured the popular imagination but have been overlooked by a traditional grant process.  Without commenting on the value of individual projects (one questionable project has funded a review of frog sounds in the Amazon), I’m fascinated by the phenomenon of crowdfunding allowing people to put their money where their passion is.

It’s a cliché that everything in our society costs money, but that doesn’t make it less true.  Rather than lament a reality that I can’t even see a way around, (after all, whether it’s rent, utilities, food, or equipment, most money for expenses goes to people who themselves have bills to pay) I love the idea that crowdfunding gives society the opportunity to pay for the things that they deem valuable, and thus bring them to fruition.

It is with this in mind that I have begun to consider an idea that has been suggested to me by various individuals for over a year, the idea of crowdfunding my activism.  I have been reluctant, because it’s hard for me to articulate the return on investment with changes that I can’t promise, but I decided to throw the issue to you, that the realization that the only true measure of whether my work is worth funding is it folks decide to pay.

Here’s how I’ve come to understand the issue.

There are two types of activists.  One is the volunteer activist.  This individual, while maybe in some cases independently wealthy, is usually someone with a full-time job outside of the world of activism, who devotes his or her spare time to a cause.

These folks really are the backbones of social movements, contributing the massive energy and capital, social and financial, that brings change.  With many competing concerns, however, it can be difficult to be the architect of change in your spare time.

The other is the professional activist.  These are the dedicated individuals, who, often for meager salaries, funded by grants and large donations, actually get to spend a substantial portion of their professional time working on change.  (I say a substantial portion because the reality of these jobs is that the majority of time is often spent fundraising to support the work.)  Most leaders of the major historical social movements at some point had to transition to this type of full-time role in order to truly make a difference.

I feel that this has been complicated for disability movement.  Many people with disabilities lack employment, it’s true, but that simply means that they are on a day-to-day struggle for subsistence, leaving even less time for energetic activism then those working other jobs.  While there are sometimes government benefits available for certain disabilities, maintaining eligibility and managing those benefits is itself a major undertaking, balancing the minuscule sums in such a way as to maintain some kind of life is a never-ending daily dance, and many people, like me, remain, thankfully, insufficiently limited by our disabilities to qualify for some categories of benefit.

That people with disabilities have, as far as we have while balancing these realities is laudatory.  That we haven’t come further is unsurprising.

This is complicated by the fact that living with a disability is expensive.  Most of us cannot live in the rundown walk-ups, split between five people, which are the stereotypical native habitat of the activist.  Medical conditions may prohibit us from eating the cheapest food available, access conditions may prohibit us from traipsing around our cities to find the cheapest food prices, and insufficient assistance available for activities of daily living probably mean we need to buy more prepared food than the average activist.  Many of us can’t ride bicycles or share the same 1980s Chevrolet among the five denizens of the previously mentioned walk-up.  When we travel, sleeping on the floor is right out, and we often need to pay extra to meet our needs in other environments.

And so, there are professional disability activists, but a disproportionate number of them are lawyers, since the civil rights statutes have attorney’s fee provisions and there is some federal funding for ADA enforcement, but this is a very specific type of activism.  Many of the balance are supported by vastly underfunded federal programs specifically designed to focus on expansion of services for people with disabilities.  If they spent too much time on activism, they would probably lose their funding, if not their jobs.  In essence, they are like the first category, with a day job in disability and activism on the side.

Is it any wonder then that a philanthropist friend asked me the other day when the disability movement would get its next big leaders?  We were blessed with Justin Dart, and a few other people in our history that for whatever reason had personal circumstances that allowed them to travel and speak and build a movement.  But we could be a long time waiting for the next one.

Even in my own humble efforts, most of what I have been doing is simply because of my current involuntary state of underemployment.  Every day I apply for jobs that, should I receive them, will sharply curtail my ability to write and speak on these topics.  I have to, because none of the articles that I write or the speeches that I give provide any means to pay my basic living expenses.

Further the, my ability to speak is limited by the complete lack of funds available for me to travel.  Forget honoraria, I have to decline most speaking engagements because small synagogues or organization where I might spread a message can’t come up with the substantial sum to fly me out, put me up in a hotel, and pay for my care and equipment on the road.  A two day trip to New York last month cost in excess of a thousand dollars.

So at the heart of this article is a question: what is my activism worth to you?

I know that people like to read what I write, because they tell me so at length.  I know that people are moved by my speeches, and my perspective, because they tell me so.  What I don’t know is if people attach sufficient value to my writing and speaking and advising to provide the funds to allow me to continue.

I differentiate this from the wonderful people who have lent me money to pay my rent and eat over the course of this year.  These people are being generous for love of me, and I’m forever grateful.

I started this piece, however, by saying that crowdfunding allows us to use our resources to enable work that we think is important.  So, again, if I were to set up a crowdfunding site, what might you give?  More than that, what might you want?  My understanding is that most successful crowdfunding campaigns offer clear benchmarks for their funders.  So, in exchange for your funding, what do you want me to write about?  What and where do you want me to speak about?  What else do you want to see me doing?  Most of my articles are prompted by issues that I have been asked or moved to address, and my speeches are by invitation to organizations that want to hear what I have to say.

On the larger question, if it’s not me, what other type of activist would you crowdfund?  What would you want them to do?  Whether or not you believe that I am the necessary change agent, I hope that we can come to consensus on the idea that change is needed, and that money is needed to facilitate that change.

I love and respect the activists that work for free.  More than that, I’m a little jealous that they can.  But isn’t it about time that we start recognizing what activism is worth?

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