Wednesday, April 13, 2016

Why Don’t You Just Learn X?

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today's story is from Savannah Logsdon-Breakstone, about getting comfortable with asking for crucial accommodations -- and setting one's own boundaries about those supports.

Savannah Logsdon-Breakstone

When I first moved out, we didn’t realize that I needed the support that I do. I’ve talked about some of these things before on this blog, so I’m going to give each of them a paragraph.

I understand general concepts around money management, but am unable to consistently apply it to my own life. (Example: I might need something but not get it, because I’m worried I won’t have enough money, even though it’s what the money is supposed to be there for.) Additionally, I have executive functioning issues that mean that making sure the right things happen at the right time is extremely labor intensive for me. And finally, my anxiety levels when dealing with the various sorts of paperwork around money are high enough that I can’t get it done -- I can’t believe the reasonable parts of my brain during an anxiety episode. Therefore, I have a payee who doubles as a financial manager. He manages my money, and the paperwork involved.

When I first was living on my own, and a couple of attempts thereafter, I got very sick, sick enough that it was life threatening. Each case was related to how my executive functioning skills (specifically around time, prioritization, identification, and initiation) impacted my ability to manage my environment. I know how to do the individual tasks, am physically able to do them (or most of them now -- I’ve had physical health changes) but am not able to manage them or figure out what needs done, when, how often, and with what urgency. This is not an easy thing for me. So my sister comes over once a week and together we take care of what she helps me identify what needs done next. We generally divide up tasks.

I attend therapy regularly for the anxiety specifically, though for other things too. I practice certain things. In fact, I’m considering volunteering with Librivox, to practice on my anxiety around phone calls.

However, there are some things that I will not be able to change about how my brain is able to handle things. The need to be okay with that is higher than my need to be 100% independent from my family right now. Without being okay with needing support, things can be a lot worse emotionally. And digging out the ways we are trained to be ashamed of the need for help, and specifically for the types of help based on disability, is really difficult.

We have enough difficulties with the myth of the true rugged individualist, the idea that a person can do all things needed to live their lives without any help from anyone else. We have infrastructure to help make travel and transporting good safer, easier, and quicker. Someone else probably grew, raised, or constructed the fiber that your clothing is made from, even if you sew your own, or you would not have time to raise/grow your food, craft your materials, and so on. Even before modern markets, there are very practical reasons why people lived in groups ranging from families (ineffective contraception isn’t the only reason for large families!) to cities. Humans are interdependent; the quality of our lives is improved by us supporting each other in various ways. It can be for any number of reasons, and doesn’t require good will for the standard ways that humans form interdependent networks.

What we run up against is the above mentioned concept interacting with diverse realities. Because someone who isn’t disabled has their basic needs supported without additional requests or effort by the community, those supports become effectively invisible to that person. But when those of us who have a different set of needs shows up, the additional support seems “special” even when it is meeting less of the individual’s needs than a non-disabled person usually gets. This makes people uncomfortable in other ways, such as making people think critically about cultural ideas that they operate under. The practical result often ends up being that people  are encouraged not to find the supports that work best for them and not develop skills they are ready for, but to instead push to conform to the number or types of support that a typical non-disabled person might use as much as possible.

Don’t misunderstand, skill development is an important thing for everyone, regardless of disability status, to engage in. Life time learning is a great thing for everyone. But when there’s a push to conform to typicality, the individual’s well being is marginalized. This goes for a wide range of disabilities.

I have friends with physical disabilities from childhood who have some very upsetting stories about physical therapists or teachers who aimed to get them to accomplish things their bodies weren’t ready for, and some of those friends retain negative body images because of those experiences. Others were pushed to a point where their long term wellness or mobility was neglected for more immediate gains, and have had age related decompensation at an accelerated rate because that push caused long term damage. Thankfully there are people who aren’t like these professionals out there, but there is still a big pressure within our culture to conform.

So when people ask me, "Why Don’t You Just Learn X," even assuming that they are meaning to be helpful or at least positive, I feel defensive and mildly offended. It’s an emotional reaction, based on being under pressure to conform to certain expectations, and being taught -- for years -- that my inability to perfect those expectations was a moral failure. Trying to undo the emotional impact of my experience is very difficult.

Essentially, I have a decent idea at this point of what I’m ready to work on developing, and if I need help figuring out the next step, I’ll ask. Promise.