Since it is still May 1st, I am going take a second stab at writing a “Bloggers Against Disablism Day” (BADD) post. I don’t feel my first attempt was well thought out or well-written; in my mind, it was justâ€¦wellâ€¦bad. The problem was I wasn’t really fired up about anything in particular. But, now I am, and when this red-head gets fired up about something, look out!
My husband Darrell also has cerebral palsy. He uses a manual wheelchair inside and an electric chair outside. Last year he went jumped through the hoops of getting a doctor’s letter and an occupational therapist’s (OT) assessment in order to get a new power chair through social assistance. The process took months and the thing cost as much as a small car!
Now he needs a new cushion for his manual chair. The gel has hardened, which isn’t comfy for his boney butt. Last week his family physician gave him a prescription for a gel cushion; he wrote what Darrell asked him to. After all, what does a general practitioner know about wheelchairs and cushions! Today Darrell took the script into the social assistance office to ask how to proceed; hoping that the current script and the documentation required for his eight-month-old power chair would suffice. Nope!
Darrell, who knows his own needs best, is not qualified to say what he needs. Rather, he needs to get a referral from his doctor (an appointment to get into see him takes a couple of week) to see an OT, which can another several weeks or months, to be assessed for the exact same cushion he has on his power chair and that is working for him. Then wait months for the approval process. Meanwhile, his ass hurts and we’re hoping he doesn’t end up with a pressure sore.
How is this assistance?
It’s not that we want to rely on social assistance; we’d much rather be financially independent. But, as I explained in my first BADD post, finding employment with a disability is not always easy. And, being “medical equipment”, the cushion is so outrageously priced; we can’t afford to buy it ourselves without a job. One cushion is the same price as our dining room table and six chairs (seat AND back!) we bought when Darrell was working.
This is only one example of how the system keeps us down and dependent. From personal experience, it is extremely difficult to free yourself once you are sucked in.
The decisions and policies that dictate our lives are made policymakers who have no clue about our lives. Yet, if we speak out, we are labeled as “bitter, ungrateful disabled people”.
Right now there is a lot of talk about Web 2.0, Accessibility 2.0, and this or that 2.0. I want to coin a new phrase “Disability 2.0 â€“ Nothing about us without us”. Will it catch on?
May 7th update: This morning Darrell called the OT who assessed him for his power to ask about a new gel cushion for his manual chair. According to the OT, the Ministry pays for only one gel cushion because an individual can sit in only one chair at a time. To clarify he understood, Darrell asked, “So, am I suppose to levitate in mid-air as I swap my cushion?” Apparently the OT was annoyed with the question, said he didn’t have put up with such nonsense and threatened to hang up.
Because the OT has closed Darrell’s file, Darrell needs to go back through Central Booking for an appointment with this OT, which may take three weeks. Then the paperwork goes to Victoria for approval. If denied, since he already has one gel cushion, Darrell has the right to appeal, which takes more time – we’ve been there before. Meanwhile, Darrell is at risk of developing a pressure sore.If you enjoyed this post, consider buying me a chai tea latte. Thanks kindly.