On May 29, 2013, the Harvard Business Review’s blog posted comments from Michael Schrage about SAP’s recent announcement that it intends to hire enough people with some form of autism to constitute 1% of its workforce. SAP deserves to be applauded for this decision, recognizing that people with some form of autism can bring new perspectives and innovation to its business.
Michael Schrage, a research fellow at MIT’s Sloan School, on the other hand, calls this “turning a bug into a feature.” That’s the first line. It doesn’t get better.
This tip is a little bit more difficult for me to write, largely because - in my admittedly limited experience - I’ve never found a good support group. It’s also difficult because in writing about support groups, I’m writing about the reasons I needed emotional support and that brought some of those old feelings back to the surface.
However, between a counselor specializing in chronic pain and a few friends who also deal with chronic and often debilitating conditions, I developed something like a support group which helped me adjust to my new way of living.
I’ve been in pretty rough shape over the past couple of weeks, but I’m trying to post on something resembling a weekly schedule. This week is a simpler suggestion for coping:
Be open about your disability.
I don’t just mean visual cues people can see, like a cane or walker or wheelchair.
I mean emotionally open. As in talking about it. As in being willing to talk about it and having the courage and strength to answer awkwardly-phrased questions.
On Friday, April 13, 2012, Dr. Phil McGraw aired an episode titled Deadly Consequences. Among the guests he had on the show that day was a woman named Annette Corriveau, who wanted the right to be able to euthanize her severely disabled 42-year-old son and 43-year-old daughter.
Both of these fully grown adults are living with a genetic condition called Sanfilippo Syndrome, a degenerative condition which affects motor functions, and they are institutionalized. A very small number of sites have addressed Ms. Corriveau’s opinions and links to two of them follow:
Live Action News summary of Dr. Phil’s Deadly Consequences episode
Life Site News: Never Again
Words fail me at moments like this.
When I became disabled, the relationship I was in at the time ended. Becoming disabled was a significant adjustment for me to make, and even more significant for my then-partner to make. In a lot of cases, relationships simply don’t survive a traumatic event or an adjustment of that magnitude.
However, as a result of that relationship ending, I wound up with a cat who was left behind.
I had never really been a cat person - I had cats as a kid, but developed allergies to them. I had always been more of a dog person. However, I found myself with a cat and I’m not someone who will turn a critter over to an animal shelter because said critter seems inconvenient.
And as much of a jerk as that cat turned out to be (although he’s finally starting to mellow out), it was absolutely the correct decision not only because I don’t like abandoning animals, but also because of how it affected my daily routine.
One of the most important ideas I’ve found in adjusting to disability is Christine Miserandino’s Spoon Theory.
Briefly summarized, Ms. Miserandino was eating with a friend who didn’t understand why her disability affected what and how much she could do on any given day. Ms. Miserandino grabbed some spoons and gave them to her friend. For each activity, she deducted spoons from the pile. As the number of spoons decreased, her friend started understanding.
It’s difficult to adjust to disability after being able-bodied - the life I once had is gone, and it isn’t coming back. I have to adjust to a new life, one in which I have to prioritize what must be done over what I’d like to do, since I may not even be able to do everything that is essential.
The Spoon Theory summarizes this idea neatly by pointing out how each activity takes some of the limited energy and ability that I have, leaving me with less to accomplish the other tasks I need to do.
Perhaps more importantly, it’s one of the single best ways I’ve found for a disabled person to explain their disability and what it’s like to someone who is able-bodied and doesn’t really have any frame of reference for it. They still won’t understand it as intimately, but they’ll now have a visual representation of it in their head and can quantify it.
And for folks who are disabled, having a way to explain it to someone is a great first step in helping them understand what you’re going through, why you can’t always talk as long as you’d like, why you need to leave suddenly and so on.
If you’re disabled and haven’t read The Spoon Theory, read it now. If you have read it, make sure you ask other disabled people if they’re aware of it. This is an idea that needs to be shared and that more people need to know.
The idea behind this blog has been percolating for years - I became disabled several years ago and went through something of a difficult adjustment period. At the same time, I had a friend who also had significant health problems going through the same sort of adjustment. We always talked about starting a blog together and keeping track of all the things we tried and did to stay sane, but - for one reason or another - we never got around to it.
I think it’s long past time that I fixed that.
I completely understand that not everything I write about here will work for everyone - disabilities are unique things and vary from person to person; two people with the same diagnosis can have different symptoms or different ability levels, so mileage will likely vary. However, these are things that worked for me to improve my ability, my health, my diet, my standard of living and so on. Over the past several years, I’ve learned a lot about how technology and hardware can be modified for different types of disabilities - feel free to modify these ideas if you think they might help you.
I had to put this behind a cut because it’s way long for Tumblr, but I really hope you’ll read it because I think it’s a very important post.
I started discussing this a little bit here, but I wanted to expand on the idea of how shopping on a very tight budget works, because obviously some people have no idea. I will add the caveat that this is how shopping was done in my family, by which I mean shopping with food stamps for a family with no dietary restrictions, with access to a car, and in a rural area of the U.S. Obviously each family’s needs are different and that is why food prescriptivism - which, remember, is a form of body policing - is fucked up.
This article about how people buy food when on a very tight income is extremely relevant to folks with disabilities since people on SSD can be on limited budgets. There’s a lot of crossover with poverty and disability.