Tomorrow marks the last day of Jewish Disabilities Awareness and Inclusion month. By the end of tomorrow, I have given 12 speeches or classes over the 29 days, each time promoting my idea of universal inclusion, that we recognize the true value of inclusion only when we are willing to welcome everybody into our communities. I say that. I teach it. I believe it wholeheartedly, and yet sometimes I wonder if I live it.
The current iteration of my speech begins with a reference to four-year-old Matan, who did not understand what he was being asked to speak about when asked to discuss his experience of what would’ve then been referred to as being handicapped, because I understood that there were things about me that were different, things that I did well, and things that I did poorly, but I felt that this applied to everybody, and did not make me special.
Sometimes I worry that I’ve lost the wisdom of four-year-old Matan as I make my living in the disability world, and as I struggle, just as we all do, to live a meaningful life. I would like to think that my various diagnoses, cerebral palsy, dystonia, anxiety, depression, and attention deficit to name a few but by no means exhaust the list, are simply attributes of mine like my finicky Ashkenazi digestive system, my hard to manage Jew fro, or the things I’m proud of like my speaking ability.
I’d like to think that, to the extent that the disabilities take a larger portion of my time, it’s because they present more challenges in the context of the world that we live in, and the time is not a focus on them, but a focus on the challenges that jump up. I’d like to think so, but I’m not sure.
Yes, my disabilities, especially my inability to provide my own support for activities of daily living can rear up, and feel insurmountable. It’s not my intention to minimize this. But I look at the assistant juggling the day in day out reality of childcare as a single mother in a strange country. I have no children. I look at the multiple assistants for whom a letter from the government, or a form from a nonprofit represent an unfamiliar intrusion that feels like the beginning of the tailspin of the structure from which they benefit. I too benefit from government assistance, but am blessed with a combination of English proficiency, systems knowledge and legal training that take the mystery out of most forms. I look at the friends, even ones that share some of my education and privilege, for whom prolonged legal battles are not only draining, but mystifying in their apparent unpredictability, and I’m grateful that though I may someday find myself spending energy in the courts, it’s an environment where I will always feel at home.
I can’t minimize the realities posed by my disability. If I don’t have someone to get me up in the morning, I will find myself very shortly all too closely acquainted with my bodily fluids. God forbid I were to be alone for more than a day or so, it would likely mean the end of my life. These are realities that are overwhelming, scary, and need attention.
But so are all the other ones for the people that face them. An insightful questioner responding to a speech that I gave this morning asked me if the exhortation not to focus overly on people’s identified disabilities meant that he should eliminate, in his words, the mental pause button that allows him to look with compassion when he sees someone apparently struggling with a disability and offer help. My answer to him was not to remove the pause button for people with disabilities, but to expand that mental pause button to every other human being that he encountered. What challenges are they facing? How might I help? Do they want my help? (An important question pointed out by another questioner)
The key to removing the patronizing stigma that society attaches to disability is not that we should stop offering compassion to people with disabilities, but rather that we should start offering compassion to everybody else.
It’s possible that even though I preach a good game about recognizing the fundamental values and challenges of each human being, regardless of whether a medical condition, of social economic one, or other is to blame, the realities of my life have caused me to inadvertently privilege struggle of people with disabilities. Four-year-old me knew that that was not the way, and instinctively rejected the distinction. 34-year-old me needs to try to recapture it.
So as Jewish Disabilities Awareness and Inclusion Month draws to a close, I pledge to try to be aware of and inclusive of everyone. Not in the minimizing way that says that because we all have struggles, the struggle of the individual is unimportant, but in the affirming way that says I want to ease whatever struggles are within my ability regardless of their root cause. If we are serious better racing stigma of disability, then we have to try to work for a place where cerebral palsy and unemployed are equally descriptive, and the extent that either situation provides hardships for the individual experiencing it, we do what we can to help to include them in society.
I know that this will promote inclusion. I secretly hope for other benefits though.
First of all, I hope for the benefit of learning to see in my own head that I can overcome the challenges that life throws because my challenges are not so difficult and unique as to be worth surrender. Secondly, I hope that this lifts the stigma of certain needs. I’d like to get to a place where my need for help in the restroom is no more a daunting request than a person who needs a ride because of a broken car. I’d like to live in a world where people can be as a matter of fact about the challenges posed by their chemical sensitivities as I am about the need for ramps for my wheelchair, not because the ideal solution will always be available, but because expressing the need should be on exactly the same hierarchy.
I don’t exactly know how we change that perception. I’m gonna keep talking about it, and I hope to slowly observe the change in my own head, and then the lucky enough to influence it elsewhere.
