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

Remembering My Grandmother on the Sabbath of Song

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

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

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

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

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

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

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

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

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

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

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