AspergerSandwich

I live in the burbs with my family, which includes a son with disabilities. Through advocacy work and a fellowship at a great hospital, I have learned a lot about the disabilities community, and the challenges and opportunities facing us. I am searching for a way to use that growing knowledge, informed by my experience in publishing and social media, to work with like-minded people towards our best future imaginable.

Have you ever thought, I can’t stand those intolerant people!? I have long been aware that teaching tolerance to someone with Aspergers can be challenging, when they tend to see the world in black and white, my way and the wrong way. I am increasingly aware that the need to learn tolerance is pretty much universal, including even me.

In a recent social media exchange, a number of people I had previously thought sympatico expressed opinions which engendered in me a range of feelings from puzzlement to incredulity to outraged indignation. The discussion veered from the original subject to critique of a multi-award-winning radio talk show host who has a neurological condition (spasmodic dysphonia) that makes her speech strained and difficult.

People said, among other things, that she should not be in broadcasting and that listening to her makes a person want to stick a fork in their ear. The fact that the radio host has a disability went largely unremarked except most notably for a person who said something like, “Yes, I know her whole story, whatever, I don’t believe she’s as brilliant as some think.”

Taking myself seriously as someone whose contribution should be a net gain on the subject of disabilities, once I reached the boiling point, I restrained myself from further comment, but have been reflecting on it ever since.  Not least distressing to me is my own feeling that I don’t even like those people any more, all because they have so little willingness to listen to a brilliant woman with a speech impediment. Now I don’t want to listen to them!

A number of themes occur to me, considering this exchange in light of the recent story of the man who got physical with a mother and child next to him on an airplane flight, another story in social media about a man who repeatedly slapped the legs of a child seated behind him on an airplane flight, and the story widely told in multiple outlets of a waiter refusing to serve the restaurant patrons who said loudly that children with disabilities should just stay home.

One: I believe it has been well established that the incidence of family violence increases as economic times get tougher and tougher. I wonder if there is a correlation between interpersonal violence in general and economic stress. I have observed that rush hour drivers are more rude and stressed than I ever remember them being, even for Boston drivers. I wonder if everyone is just so stressed out now that patience has worn so thin it is practically transparent.

Any parent of a child with disabilities knows how trying it can be to deal with their child, the heroic effort it requires hour after hour, day in and day out, to respond with patience and compassion; therefore, we are not surprised when others have little patience for our children, the noise they can make and the time they can take. That does not make it okay to talk to them as if they do not have the same right as anyone else to be here and live their lives fully in our communities, and it is certainly not okay to respond to their disability in anger, ever.

Two:  Is it just that I feel isolated, as do many parents of children with disabilities, or have we all become so much more isolated from one another, voluntarily removing ourselves, especially from things that we find annoying? It seems that everyone is spending more time insulated in our homes, in our cars, plugged in and out of tune with those around us. At our house, with so many channels to choose from, our hardship is having to wait to watch our show that is being DVR’d while other family members watch theirs live.  Or it’s our choice to wait to watch the recording, so that we can fast-forward through those annoying commercials.

Three:  The cycle of intolerance is like a Mobius strip of never-ending self-righteousness. People judge the parents who allow their child to disturb the peace of others; other people judge those who sit in judgment of the parents and the child. People judge the parents of children with special needs, for having an attitude of entitlement and getting an unfair share of scarce resources; other people judge the insurance companies and school districts who game the legal system to delay services as long as possible, negatively affecting the child’s outcome and the community’s long-term bottom line.

How can we break out of these vicious cycles? Many sources, from philosophers to poets to priests, have spoken of our authentic selves being good, compassionate, generous, kind and wise, and pointed the way to kinship through seeing the goodness in others and speaking to their highest, best self. But how does one do this when the other wants to shut one out?

The wise, compassionate part of me says, this can best be done one on one, person to person. Obviously, as a parent, I can have an influence on my children, teaching most effectively by example. But the need for change feels too urgent to go one by one, generation by generation. I want to change the world! I admit, I do not know the answers.  I only know, I am not alone. I am surrounded by people whose authentic selves are good, compassionate, generous, kind and wise.


What do you think?

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