Today, I'm posting a short essay by Sheryl Singleton Lynch who is an author, advocate and mother of an autistic child. Sheryl will be appearing the Ability Fierce TV show in a couple of weeks. She's written a fine, slim volume entitled "On The Precipice of Caring," which besides being available on Amazon, hits home with me on a lot of levels. She didn't tell me much that I didn't know but rather I feel it will probably hit home for many other people dealing with disabled loved ones. She has a knack for describing the petty absurdities parents and caregivers deal with on a daily basis, it's not so much that she tells you something you didn't know but rather that her stories ring true because if you have a disabled kid, the same things have probably happened to you. Here she discusses the near total lack of representation from the black and Latino communities at advocacy and information events. My favorite quote from today's post: "One has to have the time to immerse oneself in the culture, to go to all the meetings, to attend the events, to bone up on the jargon and make connections. One needs the skill set of an executive to keep up." Sad but true.
Now read the whole story:
The Color of Disability
By Sheryl Singleton Lynch
I noticed it as I came into the Managed Care Forum. There was a definite difference between the disabled people shown in the presentation and those in the audience. The people in the presentation were mostly, almost entirely, people of color. The audience members, parents and Office for People With Developmental Disabilities staff were predominantly white. I took a seat feeling dismayed. Once again a significant part of the audience that needed this information would be missing out. I mentally went over the factors contributing to this absence: the time of the meeting (5-7 pm) – if I’m a working parent, there’s no way I can make it on time; I found out about the meeting by being on the office's mailing list – do most parents have Internet access? Do they know about the developmental disabilities office, their website and mailing list? Have parents attended other meetings and written them off as too jargon-filled, over their heads? One has to have the time to immerse oneself in the culture, to go to all the meetings, to attend the events, to bone up on the jargon and make connections. One needs the skill set of an executive to keep up; I have the feeling that a new immigrant or a loving grandparent might not have those skills. The people I saw in my son’s school were mostly working class. Many of them would not be close to making ends meet if it weren’t for government assistance programs. That’s the parents. The agency staff members are mostly people of color, too, overwhelmed by the sheer volume of the task and sorely underpaid. Last year I went up to Albany to participate in the BFair2DirectCare action there. Why is it that people who provide essential services are so discounted when it comes to pay? Really, it took this long to figure out that a person who provides physical care to others deserves to be paid at least $15/hr.?
Privilege is ingrained in this society and the disability community is not immune. I remember one instance where I attend a 5K event with my son. I had made a contribution. We completed the event and were sitting down, talking quietly and looking around. At one point one of the agency executives saw us and must have thought I was one of the staff as he came over and ordered me to take my son to one of the booths. I don’t think he would have done that if I were white. This colorism, classism, sexism, racism has even infected my son to a degree. He tends to discount the black women who care for his physical and emotional needs, take him where he wants to go – including me. I issue frequent reminders that I am not a servant. My son is not the only disabled person with this attitude. I have heard clients refer to their adult home health attendants as “the girl”. I am respectful of the people who work with my son, acknowledging their caring and hard work.
This is a big can of worms, and maybe the best we can do for now is to stop perpetuating the culture’s bad acts and problems. As we strive to bring disable people into the tent, can we bring all of them, and those who are connected with them as well?