Uncategorized

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.

Advertisements
Standard
Uncategorized

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.

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

Remembering My Grandmother on the Sabbath of Song

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

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

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

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

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

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

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

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

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

Last week, though, I raised my voice in full in that Sabbath of Song, in my aunt and uncle’s unfamiliar synagogue.  I mourn my grandmother, whose memory blesses me every day, but I think her for her wisdom and support, and I thank God for giving me the opportunity to honor her memory on the Sabbath of Song.

Standard
Uncategorized

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…

View original post 783 more words

Standard
Uncategorized

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.

Standard
Disability, Judaism

Welcomed Without Asking: Making Our Communities Inclusive to All

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

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

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

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

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

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

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

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

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

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

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

I reject the idea that forcing people to identify is necessary or right.  Certainly, at the very least it creates awkwardness and stigma.  In a worst-case scenario, it gives license to exclude from a community of support simply because someone isn’t carrying the right (metaphorical) paper.  I posit that a truly inclusive community would strive to broadly accept the habits and behavior of its members, without requiring an identity of disability.

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

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

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

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

Standard
Disability, Disability Rights

Cartographers Needed: Looking to Draw a Roadmap for Change

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

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

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

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

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

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

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

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

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

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

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

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

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

And yet, I believe that for the largest and most intractable problems, grander scale solutions are needed.  I don’t have them, so I can’t propose them, but I’m asking for them.  Join me in starting the dialogue, that together maybe we can find the answer.

Standard