I have vigorously espoused the notion that it is wonderful to be a disabled person, while entertaining doubts about just how far the concept could take me. I have even gone so far as to say that I wouldn't take the magic pill that would eliminate my disability. But always in the back of my head was the feeling that maybe this was too radical.
I got a wonderful opportunity to see how important and valuable my disability identity is to me. In early July, after feeling a heaviness in my chest while madly pushing my wheelchair to the gate for check-in at Chicago's O'Hare I went to my PCP (primary care physician). A friend's recent quadruple by-pass surgery was definitely a motivator for my doctor visit. He didn't think that there was anything to worry about, but because I was over 50 it wouldn't hurt to check it out. My next stop was the cardiologist and a series of exotic tests. After all was said and done the cardiologist determined that I had an 80%—90% blockage in my largest cardiac artery.
It was then that disability concerns entered into the equation. The standard procedure for by-pass surgery calls for splitting the breast bone or sternum, opening up the chest cavity, operating on the arteries, and sewing it all back up again. Knowing enough physiology to realize that just about every movement I make involves my arms and every movement would put pressure on my split, healing sternum I realized that I would be in trouble. I faced the prospect of greatly reduced mobility for weeks–essentially having to learn how to live life as a quad. After raising my concerns with the cardiologist he offered an alternative. With my condition I could have a much smaller incision that went between my ribs on the left side of my chest. My right arm would be virtually unaffected and my left only somewhat compromised. All-in-all it would be much less of a problem than the sternum splitting operation.
There was only one problem. My HMO would need to grant me a special exemption. None of their contract surgeons offered the surgery I needed. I would need to go outside the plan. It was at the moment that the cardiologist told me that there was an alternate procedure I needed because of my disability and I would need to advocate with my HMO to get past their one-size-fits-all mentality.
I went from being a somewhat lost 53 year old guy with cardiovascular disease to a disability advocate with thirty years of experience. I went from feeling buffeted by a new, scary, medical condition to the solid ground of confidence in my ability to convince a large bureaucracy to treat disability concerns fairly.
I was able to navigate the medical system and secure the alternate operation. In a tangible way I discovered how important the disability community is to me. I reached out to a couple of advocate friends of mine to help me strategize and I had a plan. Fortunately we have begun to develop an infrastructure. Using the local library I found very little on the downsides of a paraplegic with a split sternum but when I turned to the web and SpineWire I found information and support.
A side benefit was discovering that the new generation of doctors who are ten to fifteen years younger than I am understand disability concerns far better than those ten to fifteen years older than me. Just like society at large there are generational differences in how we are perceived. These younger docs have gone to school with disabled kids, been exposed to positive media messages, and heard of the ADA. It's making a difference.
When all was said and done I got the surgery I wanted. It turned out far better than I could have expected. The first night home from the hospital (four days post surgery) I was able to transfer from my wheelchair into the bathtub and get back out without help. If I had a split sternum I doubt if I could have transferred at all. Now three weeks after the surgery I can do everything I could before the surgery, although a little to a lot slower.
What an odd experience. One minute I'm feeling isolated and alone even though my HMO will be taking care of everything. Once I discover that I have no corporate support but my experience has become a disability issue I feel connected and powerful. It makes sense. I would much rather seek comfort from my brothers and sisters than from an insurance company.