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 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.

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.

Votes, Violence, and Value: A Plea to Recognize the Basic Worth of the Lives of People with Disabilities

I voted today. It was no big thing, really.  I went out my back door to my polling place, located about 1000 feet away.  I was looking around for the entrance and saw another gentleman in a wheelchair approaching the building, and asked him if he knew where it was.  He said I was in the right place, and that I could follow him in.

As we rolled in together, chatting amiably, he said “and it’s fully accessible.  We don’t ask for much, just to be able to get in.”  Once I did get in, the experience was very smooth.

My polling place has this handy touch screen machine that filled out my ballot for me, far more convenient and less intrusive than the cumbersome process from my polling place in New York where two poll workers, one Democrat and one Republican, would have to sit with me while one marked my ballot.

I used the machine, handed over my ballot, and came home planning to write a blog post about progress, contrasting the New York process and the Massachusetts one.

Then, I remembered a Facebook post from my wall this morning, and autistic activist friend who wrote, in in response to the horrific murder of the six-year-old autistic boy thrown off of a bridge by his mother “You want to know the most basic thing you can do for autism acceptance?

STOP F****** KILLING US.”

Accessible polling places are important.  The franchise is fundamental to our acceptance as citizens.

A basic right not to be murdered, though, is fundamental to our acceptance as human beings.

Now, you will argue with me that the murder of people with disabilities is already illegal, that the seemingly endless stream of grisly murders, especially of people with autism and intellectual disabilities by parents or guardians, is already illegal.  You will say the same about the fairly frequent stories of law enforcement officers using excessive and sometimes deadly force on people with sensory or psychiatric disabilities who react to approach or arrest in ways that surprise the officer.

There is that.

But every time one of these stories is reported, some subset of voices, hopefully a minority, talk about how it is justified.  They tell us that we can’t understand how hard the perpetrators of these crimes had it, what they were going through.  Some will even label this a tragedy, but not a crime.

Homicide doesn’t occur in a vacuum.  Almost every homicide has precipitating factors, which can range from horrific abuse, to unspeakable provocation, to a systematic socialization in an unacceptable moral paradigm.  There are very few killers who have no answer to why they kill.

Sometimes our justice system allows these factors to mitigate sentences.  Sometimes we recognize that circumstances might temper punishment.  As far as I know though, nobody ever tries to argue that these factors obviate the criminal nature of the homicide.

Yet, certain disabilities, like autism, seem to be fair game for this argument.

How can that be?  To me, it can only be with a subconscious degradation (I’m deeming it subconscious to give all who hold this perception the benefit of the doubt) of the humanity of the victim.

Many would agree with the statement that self-defense or the immediate defense of another are the only justifications for the murder of another human being.  If the same person can entertain a gray area around people with certain disabilities, they are applying a different standard.  Certainly, the media discourse seems to imply such a standard.

I voted today, and that’s important.  I’m glad to be enfranchised, and I salute the work of all of those that push to expand the franchise to the many Americans, with disabilities and other minority statuses, functionally or actually denied the right to vote.

But, it’s easy for a privileged professional with a physical disability, a definition that fits me and which I believe would have fit the individual who showed me to the polling place, to lose sight of how low the bar is set for many of our less privileged brothers and sisters.

The gentleman who showed me to the polls said that all we are asking for was to get in the door.  For many of us, the goal is so much simpler, “stop F****** killing us.”

Stop killing us.  No matter how many times I repeat it to myself, it doesn’t lose its powerful simplicity.

Most of my readers can’t directly stop any killers.  But you talk, and you write, and you vote.  You, too, can influence the changing perceptions of society.  So, the next time a tragedy like this comes to light, and, sadly, there will be a next time, change the dialogue.  Let us not let compassion for the difficulty of others eclipse the fundamental value of a human life brutally taken, which is never okay.

Call people on the attitude.  Get them thinking.  When there is the opportunity to influence change agents, get candidates to commit, and exercise your votes for those who recognize the value of the lives of people with disabilities.

From my electronic voting machine, it can feel like we have come very far.  From these news stories, it can feel like we are nowhere at all.  So let’s take the first step.  Recognize that humanity is a basic attribute regardless of disability, and demand that people, “stop F****** killing us.”

The Many Ways and Many Whys of Speaking Up: How We Can All Take a Lesson from Tim Cook

Last week, Apple’s Tim Cook publicly acknowledged that he was gay.  As Mr. Cook’s words clearly demonstrate, he didn’t come out, because he hadn’t been in a closet. Said Mr. Cook, in an article that he wrote entitled “Tim Cook Speaks up”, Mr. Cook points out that, for years, he has been “open with many people about my sexual orientation. Plenty of colleagues at Apple know I’m gay,” But, as Mr. Cook said, he didn’t publicly acknowledge it.  He didn’t, in his words, speak up.

His reasons strike me as easy to understand.  He says

“Privacy remains important to me, and I’d like to hold on to a small amount of it. I’ve made Apple my life’s work, and I will continue to spend virtually all of my waking time focused on being the best CEO I can be. . .  I’m an engineer, an uncle, a nature lover, a fitness nut, a son of the South, a sports fanatic, and many other things. I hope that people will respect my desire to focus on the things I’m best suited for and the work that brings me joy.”

In a way, this parallels my own journey around disability.

Obviously, my disability was never a secret.  I travel through the world in a power wheelchair, among other things.

And yet, there was a time in my life when it was critical to me that I be identified with my varsity academic team skills and my Hillel leadership, and pulled sharply away from identifying with the disability movement.  It wasn’t until directly confronted with a specific need that I was the only one able to fill that I first took on a disability related role.

Like Mr. Cook, I realized that I had to speak up.

15 years after my first public disability leadership role and having recently completed a term in one of the highest profile disability offices in the federal government, I still wrestle with this issue.  I still tend to apply to jobs were my primary value is my legal prowess or my business acumen, even if I apply it in a disability context, and I ask people to recognize that I am more wonk than activist.

Equally important, I try to make clear that, though I am a straight white person with a disability, I am extraordinarily passionate on questions of justice and equality for people of color and the LGBTQ community.

Very few people are one-dimensional, and I think it is very natural to want to be identified by your talents rather than your minority status.  And yet, says Mr. Cook, that desire for privacy, which reads like a desire not to be labeled was holding him back from making a difference.  He says,

“I realize how much I’ve benefited from the sacrifice of others. So if hearing that the CEO of Apple is gay can help someone struggling to come to terms with who he or she is, or bring comfort to anyone who feels alone, or inspire people to insist on their equality, then it’s worth the trade-off with my own privacy.”

Even as it was important for Mr. Cook to continue to be identified with the incredible talents that he brings to Apple, he recognized that, by the very fact that he was the CEO of Apple, he had a certain role to play in the quest for equality, if he embraced it.  I like to think that my own embrace of disability as a cause was motivated by something similar.

Unlike Mr. Cook, I am now an intentional activist, but, even when I’m wearing my corporate lawyer hat, I tried to live in a way that publicly embraces that I’m a corporate lawyer with a disability.  I speak to bar associations and groups of children.  I serve on diversity committees, and try to help my legal employers when they seek the disability perspective.  I embrace both roles because I know that to do so is a way to make a difference.

And I do believe that it needs to be an intentional choice.  We have become a polite society.  For better or worse, despite my very visible disability, very few people are going to approach men disability issues unless I open the door.  I think that’s a good thing, I think it should be a choice.

It should be a choice because everyone has their own circumstances to deal with, but I encourage those who can to speak up.

If you are a person with a disability who does not feel the need to hide that disability because of a high risk of discrimination, even if you don’t think of yourself as an activist, think about publicly embracing the label.  Embrace it to become an example to the searching for role models, a living example to your coworkers that people with disabilities are just like them.  Don’t drop your life and become an activist unless you really want to, but think about how you might do as Mr. Cook is done and turn the life that you are leading into your own form of activism by speaking up.

In Solidarity: Falling off My High Horse to Embrace My Identity

I have always been suspicious of solidarity.  Solidarity always felt fake.  It always felt a little bit like privileged people assuaging guilt or boredom by taking on a shared label with their oppressed brethren.  It felt like the fallback position for those who couldn’t or wouldn’t join in opposing oppression unless they could feel themselves oppressed. In fact, whenever I was caught up in a web of solidarity, be it the ubiquitous street nod to a fellow wheelchair user or a passing Jewish greeting to a complete stranger on the Upper West Side, I always felt like a bit of an impostor.

I could nod, but as a privileged Ivy League lawyer, did I really understand the realities faced by most people with disabilities?

I know the proper call and response for every occasion in the Jewish year, and I wear a yarmulke, but as a public school kid growing up in a reform family, I never felt the mismatch with secular society that some who grew up observant struggle with.  Growing up in New England, even the anti-Semitism reported by my friends in other parts of the country was foreign to me, living, as I did,  in a region which has adopted a lot of Jewish culture as its own.

I could be, and was, sympathetic to the struggles.  I even wrote blog posts expressing gratitude for my luck at not struggling as they did, and I have worked as an advocate, especially in disability circles.  But, in my heart, it was often their struggle.  However guilty it might make me feel, I felt no right to claim that I was fighting for me.  This made the solidarity feel fake.

In recent months I have begun to realize that this was a comfortable arrogance.  More than anything, it was a delusion about my own situation.

Just this week, a Jewish couple was attacked on the Upper East Side of New York.  Over the last few years, I walked through that neighborhood many times a week with not a care in the world.

Further, as I find in the precarious world of self-employment and receiving services from Medicaid for the first time since passing the bar almost 10 years ago, I find myself falling into the half remembered shuffle of a welfare beneficiary, my life subject to the arcane and irrational requirements of the government programs on which I depend for my medical care and my personal care.  Today, I misread a letter that appeared to indicate a significant reduction in my personal care services, and I experienced a gut twisting surge of nauseated panic as I frantically tried to resolve the truth while living nightmare scenarios of how I would deal with the reduced care, since my current system is barely sufficient to meet my needs.  Thank God I had just misread the letter.

And so I come face to face with a bitter reality.  As long as I live in a world where people with disabilities either often cannot live independently at all, or at best can do so under programs with complicated and limiting rules, I am not guaranteed to live independently.  As long as I live in a world where people are attacked simply for being Jews, I am at risk, whether I live in Boston, New York, or Vienna.  The struggle of my brethren is my struggle not because of empathy, or even shared identity, but because as long as they are at risk, I am at risk.

I had been living high and mighty for a while, a New York Jew with a fancy lawyer job, paying for all my own personal care.  I may get there again.  But until all of my brethren have reached the security that I enjoy, I am not safe.

This, then, is what I have learned.  I must fight for the rights of all like me.  Further, it is imperative on me not because it is right, though surely it is, nor because I feel for others, though surely I do, but because we are all in it together.  Next time I get the nod, I will return it with full acceptance of our shared destiny, our shared struggle.  We will join together, in solidarity.

Finding Our Own Path Through the Darkness: A Reflection on the Death of Robin Williams

I didn’t know Robin Williams.  Further, in an overabundance of honesty, I will say that he wasn’t particularly my favorite anything.  I like some of his roles, I disliked others, and the two main television roles that I observed, Mork and Mindy, and The Crazy Ones both irritated me.  When I read on social media of the people lamenting the loss of his talent, I am left largely unmoved.  Plenty of people cease their professional creative lives by their 60s.  We would not be lamenting the loss of Mr. Williams talent if he had chosen to retire from public life at 60 to take up birdwatching.  I don’t even know if we would be lamenting it in quite the same way if he’d had a heart attack, or been hit by a truck.

Rather, I think the unique pain that I, and perhaps many others, feel at his death is the idea that this symbol of joy, beacon of good humor and, by all accounts, all around good guy, who read for dying children and snuck in the hospital rooms to see injured friends, was himself in so much pain that he took his own life.  A piece in Slate magazine yesterday closed by noting “Mostly I wish that his lifetime of sharing himself with us had somehow nourished him as much as it fed us all.”

A Facebook friend with whom I am not close commented that she only wished that Mr. Williams had understood how valued he was by his fans.  Frankly, I’m sure Mr. Williams did know.  By all accounts a smart man, he had won numerous awards for his talent, and sold millions of copies of his movies.  The point is that this recognition, perhaps even adulation, did not provide him the nourishment that he needed.

As someone who struggles with depression, and someone who has more than my fair share of promoters, supporters, and partisans, I empathize.  I have read descriptions of my life that have left me overwhelmed and sheepish in equal measure.  I have received such kind words that, verbose as I am, I have been bereft of speech.  I have known people to fly around the world to celebrate with me, and have once or twice been hugged by complete strangers with the simple explanation that they had heard much about me and simply had to express their affection.

And yet, as a depressive, I am often alone in my pain.  For me, the best that I can describe it is a wall or a distance that all of the love and affection in the world feels unable to breach.  I won’t pretend to know how it felt for Mr. Williams, because I think we each experience this in our own way.  (Lest anyone be worried, I am not suicidal.  As psychologists have observed, I am “lucky” enough that on my worst days, the paralyzing fear of death created by my other mental illness diagnosis, anxiety, completely overwhelms any inclination toward self-harm) I have my truth, he had his, and ultimately his led to a decision that most of us cannot fathom, and that those of us can wish we could not.

Why do I write this?  Well, if I succeed in nothing more than addressing the apparent misconception that a person suffering depression must be unaware of the value that they represent others, then I suppose that that is a public service.  More importantly, though, I seek to dimensionalize and deepen the way people look at this issue.

There is a vast toolbox in the fight against depression.  From therapy and psychopharmacology to faith, lifestyle alteration and the love and support of families friends and communities, the best combination for each person must differ, even as each person’s depression differs.  For me, social interaction, comfort, purpose and lack of stress are key factors.  For someone else, adulation and a recognition of value might be critical pieces in the ongoing fight.  Only trial and error on the part of the person with depression and attentive receptivity to preferences on the part of those wishing to help can determine which tools will be of best use in each person’s individual battles.  All we can take from the tragedy of Mr. Williams passing is that he was unable to find a combination that worked for him, and that is a tragedy.

It may be empirically possible, as the Slate article does, to observe that sharing of himself was not sufficient to leave Mr. Williams feeling fulfilled, though even then I hesitate to make any judgments about the relative value of a particular experience simply because he ultimately lost his fight.  It is surely not possible to presume that he was unaware of his value to the many who valued him greatly.  We know only that this awareness was insufficient, in his case, to give him the strength to continue the fight.

So, don’t take from my words a particular prescription.  Rather take from my words the knowledge that this is a grueling battle and the path to victory is long and uncertain.  If, as me, you suffer from depression, the best I can advise is to try to avoid giving in to a feeling of failure or hopelessness when a particular treatment or strategy does not resolve your pain.  (Far easier said than done, I know.)  The strategy that works for you may be around the corner.

If you wish to help someone who is suffering, start by jettisoning the conviction that you know what it is that they need.  The same hug that is a lifeline for one suffering person is a nonevent for another, and an unwelcome invasion of space for a third.  Rather, be willing to give whatever it is they do need as it reveals itself.  I have no magical prescriptions.  I am far from victorious in my own fight many days.  All I can offer in the wake of this tragedy is my point of view, and maybe a little bit of perspective.

Mr. Williams, the stories that are coming out about your life are truly amazing and your memory will be for a blessing.  Your pain has ended now, and, maybe, just maybe, as such a wide icon with such a successful life that nonetheless ended tragically, you will be the catalyst that starts the discussion that helps a few others find a path through their pain that leads to life.  May it be God’s will.

Building an Inclusive Jewish Community

My friend Rabbi Micah Streiffer provides two resources on Jewish Inclusion