This Disability Pride Month I am reflecting on the complicated identity of disability for those of us with physical disabilities.
I am often “reminded” by those inside and outside the disability community that having a disability is only made difficult by the people around us, by ableism, by discrimination, by lack of accessibility. This can be a useful sentiment that highlights how our lives are so often made so much more difficult by others. For many of us, it is also a lie.
This Disability Pride Month, I would like to suggest that it’s ok to talk about our bodies and our lives with nuance and it’s ok for us to discuss just how difficult it can be to live in and with our disabled bodies. Our lives being hard doesn’t make them any less valuable. We can be proud of and celebrate our disabled bodies while acknowledging that, for some of us, the experiences we have as physically disabled people with disabled bodies can be downright horrific and sometimes terrifying.
In December, I missed out on Christmas entirely because I had diarrhoea. I know every one of you are thinking... Too Much Information. Bowel problems are a taboo subject and it’s unpleasant to think about. More than unpleasant is the 6+ months I’ve now had to live with this ailment. I still don’t know what’s causing it or how to fix it but I’m working on finding answers.
A reason for the delay in seeking more concentrated attention on this issue is that on January 4th of this year, I broke my femur. It’s a “non-union break”, meaning that the femur is completely broken through. I sort of collapsed slowly onto the floor as my wheelchair slid out from under me that night as I was reaching for something on my bed. I hauled myself back up into my wheelchair and went to bed, hoping I hadn’t hurt myself.
The following day I woke up and didn’t feel wonderful. By the time my cleaner arrived that morning, my temperature had started to raise and I got myself to hospital. I had sepsis, completely unrelated to my broken leg.
The symptoms of sepsis masked any indication of a broken leg and, for one reason or other, I went about 6 days in hospital without diagnosis. In the discharge lounge, after the antibiotics had done their thing, it was now up to me to convince the doctor who was overseeing my discharge that something was very wrong.
I was sent for x-rays and immediately readmitted, this time to the orthopaedic ward, for two months of “conservative management” of my very broken femur. It was supposed to be six weeks, but I got two more sepsis infections of increasing severity while I was in hospital, as well as a couple of pressure sores, both of which got infected and took months to heal, as well as several other infections. I also still had chronic diarrhoea.
By this time, I was in screaming pain and I needed a few different painkillers, including both long acting and quick release Oxycodone. Some months later, under the supervision of my doctor, I came off the painkillers that I had developed a debilitating and painful dependence on. The process of withdrawal was horrific.
I’ve had some bad years but this one has been by far the worst. I’ve really only given you the “highlights”. I don’t know how I’m still alive.
After all that, my femur hasn’t healed at all and I’m getting an above knee amputation.
None of this would have happened to me without osteoporosis caused by paraplegia or without the circulatory issues, skin problems and neurogenic bladder and bowel I have that makes me so much more susceptible to infections and life threatening sepsis. It’s important for me to say this because our experiences, as people with physical disabilities, are so often an inconvenient truth. Our experiences as disabled people with bodies that can sometimes make life truly awful are kept quiet.
This Disability Pride Month I’m proud of myself and my family, especially my youngest sister who I sincerely owe my life to, for keeping me alive. My sister and I have always been close, but this year brought us so much closer. I literally couldn’t have done this without her. She has been the one constant that has made me hang in there for something better.
It might seem strange to say but I love my disabled body and I'm proud of it. We’ve been through a lot together.