Disability, Disability Rights, Independant Living

Guilt, Privilege, and Paying Attention

Years ago, as a young law student, I wrote the following reflection, while working to guide and supervise a plaintiff in Health Law Advocates‘ successful lawsuit to secure meaningful dental coverage for those on MassHealth. I wrote:

Guilt is not an emotion that I grant too much time. I didn’t ask to be lucky, didn’t ask to be one of the few persons with disabilities to get all of the services that I need, including “Cadillac” services like twice yearly fluoridation, twenty-four hour Personal Care Attendants, and all the Durable Medical Equipment I need. I am no less deserving than anyone else. Yet, what gives me trouble is that I am also no more deserving. “There but for the grace of God goes me.” This rings through my head as I sit at my Vocational Rehab-purchased laptop reading about the tens of thousands just like me. Just like me, but not like me

Maybe they were not uniquely “lucky” to have a disability that left them with full cognitive potential and still photogenic enough to evoke a desire to help rather than the discomfort and ostracism. Maybe their parents were not as tenacious, or as well educated, or as committed, if they were present at all. Maybe they were not blessed with a school system filled with individuals determined to find their abilities, and to help them to grow into their full potentials. Maybe they did not find

a University institutionally and individually committed to their success, complete with tens of thousands of dollars and hundreds of compassionate person-hours of expenditures. Maybe they did not find advocates and allies at every level of Social Services, people that shepherded them through the twists and turns of a system in which so many people fall through the cracks, despite best intentions. Maybe they just didn’t have my knack for being in the right place at the right time. So many maybes…

I didn’t ask for my disability, or my wonderful services, and our twenty-first century sensibility says that the corollary is that I don’t owe any more than gratitude. Like heck, I don’t! Call it God, Karma, or luck, I am where I am by a unique confluence of incredible circumstances, of love and fate and the blood sweat and tears of more good people than I will ever know.

I’m here and others are not. Guilt is not a useful emotion, but let me transmute it into a sense of obligation. Only by taking my unique position and dedicating myself to helping others conquer their maybes can I justify the effort, love, and blessing that went into giving me the life that I have.

“There but for the grace of God goes me.”

It may be true, but Judaism teaches that we are all partners in the work of perfecting our world. We are all partners, and hence must work to be the mechanism by which one more person gets where I am, and one more and one more, until the problems that I read about today are just another set of unfortunate moments in history.

If everything happens for a reason, then I thank God for the wonderful people and opportunities in my life, and pledge to take the chance they gave me to help as many others as I can. I didn’t ask to be lucky, but I am. God, help me to never lose sight of just how lucky I am. But also, help me to never be take that luck for granted, and to do it appropriate homage by using it for creating as much good for others as I can.

In the dozen years since I wrote this, much has changed. The lawsuit was won. My words were used by a wonderful Rabbi to teach us all. And, I no longer get quite get all of the wonderful services I got then. What hasn’t changed is the conviction that I am fortunate, have had the luck to avoid a much more difficult existence, and feel that that obligates me to do what I can.

Also, I’ve learned that while my lucky turns, and where they could’ve changed, are fairly obvious, any one of us could lose health, physical ability or means at any time. “There but for the grace of God goes me.”, but there but for the grace of God goes you too. I know what I’m going to do about it, but what about you?

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2 thoughts on “Guilt, Privilege, and Paying Attention

  1. Pingback: In Solidarity: Falling off My High Horse to Embrace My Identity | Matan Koch's Blog

  2. Pingback: A Little Fire for the Engine of Change: The Driving Power of Love and Outrage | Matan Koch's Blog

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