For many many years, with very mild disease, I was able to live my life without too many disease-related issues getting in the way. It's been a huge eye-opener to find myself in a quite different world since that changed. I find myself living with an increasing degree of disability, and trying to manage a whole lot more pain - something I didn't really consider beyond my initial panicked state during the early times just post diagnosis.
Among other things, it's brought me into a company of writers whose schtick is disability-based, whether their focus is on their particular situation, or they're looking to create a bigger reach, with awareness raising and advocacy. It's been a steep learning curve, at times; sometimes challenging and confronting, and at other times, to be brutally honest, more than a little bit irritating. As is the case in just about any community - be it professional or other - there are concepts, catchphrases and jargon terms to be found.
There's one idea that seems to be a growing area of discussion in chronic illness and disability circles - that of the notion of 'disability pride.' I struggle with it, to be honest. Essentially, it points to people's disabilities not being a deficiency of any kind, or something to be ashamed of; that the disability itself is integral to the identity of the individual, and that there is pride to be had in that individual identity, disability and all.
It's something I've seen in documentaries about people with varying disabilities. I distinctly remember a series of programs on SBS TV looking at the lives of deaf British teens as they transitioned from schools - some mainstream, some geared specifically to deaf students - into the workforce or higher education. There seemed to be a range of ways by which the kids presented themselves and the aids they chose to use, or not, to aid communication with the hearing world. There were a significant number who chose not to have cochlear implants, or to learn to lip read and to work with speech pathologists to learn to speak - preferring to only communicate via signing. Those who did spoke about that being THEIR language, and that it was part of their identity, while speech and lip reading meant they were leaving that identity behind to enter into that of the hearing community. That's just one particular disability and one group of teens in a single documentary series, and clearly the choices people make are going to be as diverse as their disabilities and life experiences offer.
One feature of the discussion I'm reading across a number of different platforms is the feeling that many people aren't looking to be cured of their disabilities. The importance of their identity as a disabled individual is far more important, as the notion of a cure suggests that as a disabled person they are somehow deficient and need to be 'fixed.' I think this is where there is, perhaps, a major schism within the disabled community when it comes to the origins of the disability. Whether its something congenital, or acquired, and then if it is something acquired, whether it is due to an accident or a disease. Across that spectrum, there are many, many lived experiences. I don't think it's possible to lump the lived experience of that range of difference into one basket, and I think that having a sense of pride in a disability is going to be something that varies widely depending on the cause of the disability.
For myself, the idea of my incrementally acquired disabilities that are slowly increasing as RA takes its toll on my body, is something I have real difficulty taking pride in - and speaking with other people who have RA, I found a similar struggle. One close friend summed it up perfectly, I think, for those of us living with painful, degenerative disease and resultant disability:
My disability is caused by a degenerative and extremely painful disease. I do believe the level of function a person with a disability has is crucial to this debate, and the level of pain that a person is forced to endure. I have read that some believe that to want a cure is to equate the term disability with ‘defective’ and we should instead make it a proud part of our identities. That’s a huge leap and a very hard thing to do when you are in constant, severe pain, which requires round the clock morphine! When you are completely dependent on medication, friends and paid carers to exist in any meaningful way. So no, I have no pride in my disability causing disease! I doubt anyone in my position would. Given the choice, I’ll take a cure, thanks. Not because disability is ‘defective’ or makes me a lessor person, but because I want a better quality of life and I don’t want to live in severe pain forever! The term disability is far too broad to even try homogenise us into one cohesive group. My son has autism. He doesn’t need to be fixed or cured, but he does need support. My friend is deaf and is offended at the idea that anyone would consider her as disabled at all. My daughter’s friend has a cochlear implant and wants desperately to hear! It’s personal. And it needs to be allowed to be personal.One very important thing at the end of that quote is that it's personal. Everyone's experience is different. There's no one way to be disabled any more than there's a single way to be anything else. Unfortunately, as I've found a lot in the online world, there can be a huge sense of competition around illness and disability. It can be tricky sometimes to put forward a differing point of view, or a different slant on a similar experience without being shot down. It's one reason it's taken me so long to write this post, because I've been wrestling with the concept of disability pride for a long time now, and the odd times I've put my thoughts into words on discussions threads, I've perhaps not put them as clearly as I might have - whatever the reason, I've been on the pointy end of people's displeasure. There HAS to be room for everyone to air their own experiences, and there needs to be respect for the differences. We don't all live the same lives, or have the same disabilities, or the same challenges.
I took my questions to a group I'm involved in and asked a few other people as well, and found similar viewpoints to my own - mainly because I asked the question of others with chronic, painful diseases, rather than people whose disabilities have different origins. I wanted a broader picture from within the group of people I know live more closely to the way I do, with similar challenges and difficulties. I can't speak for an amputee, or a paraplegic, or a blind or deaf person - because I don't have their experience of what that's like. I can speak for people with RA and similar autoimmune diseases, because it's something I know all too well. The picture is different to the one I'm seeing in the wider conversation:
These days still no pride but I feel a sense of belonging - in this group; and conversely a sense of not belonging completely in the rest of my world. I do feel proud of my coping skills and determination in spite of my issues but no pride in the actual disability ... I think the pride is to be had in the sense of WHO we are WITH our disability, but not OF the disability itself.And:
I sort of feel it is different if actual pain is involved in the disability ... yet someone who is deaf may refuse a cochlear implant as they don't feel they are disabled by lack of hearing and are happy to be non hearing.. that is quite common. So certainly a person with painful chronic illness would more than likely be happy for a cure whilst a deaf person may find it insulting to suggest this ...And this:
... there's a lot of shame around disability and around having a chronic illness ... Disability pride is about rejecting that, accepting who you are and not make apologies for that.While the notion of not being ashamed of having a chronic illness and associated disability is powerful and, to me, self evident, it is a big issue for many people in the chronic illness communities. For many, the fact that they feel they can't contribute as productively as they might be able to if they were healthy is an emotionally painful part of their existence. Likewise, those with children at home often voice their sadness about not being able to parent they way they might perhaps have liked to. For many of us, while watching the Paralympics was a joyful activity, because seeing people overcoming the challenges of disability to compete at such a massive event was wonderful, the reality for a lot of people with chronic illness is that those activities are not physically possible. In fact, Rheumatoid Arthritis, while it can and does lead to many people using wheelchairs full-time, isn't on the list of disabilities that qualify for participation in the Paralympics, although Multiple Sclerosis, now classified as an autoimmune disease, is.
RA, and other autoimmune diseases that include an arthritic component as part of their presentation, are painful and debilitating. Disability occurs as the disease slowly destroys joints and bones, but the pain of the disease itself can be appallingly disabling too. With severe advanced disease there can also be organ involvement, leading to even less active function. The disease is incurable, and current drugs can only slow its progression. I don't know a single person with RA who doesn't want a cure - to be done with the disease for good. And therein lies a critical difference between those of us with disabling diseases, and those with disabilities that are not caused by disease, which isn't, largely, taken into account in the broader conversation.
There is archaeological evidence that autoimmune diseases have been around for a very long time - I found this article about an Italian woman from the Renaissance period just this morning - and while there are better medical options for people with RA now, it's still incurable and will, in the lifetime of the person who has it, continue to cause degeneration and varying levels, some extreme and severe, of disability. So, rather than blowing ourselves up with a sense of pride that most of us don't feel about our disability acquired through this disease, we really do want a cure, for preference.
... I want a cure because I would like to not have my body destroyed, and my life expectancy affected, to not have the pain. I don't want a cure because I am ashamed off what I look like or the fact that I have a disability. I'm not rejecting disability. I'm rejecting the illness that ravages my life.For me, my disability isn't a matter of pride. Nor is my disease. Those are just things that have happened. My sense of pride comes from my achievements over a lifetime of throwing myself into new situations and seeing what I can learn, and then coming out the other side and doing something with that. As one of the people who contributed to this post said, there's a real sense of pride for many of us, myself included, in achieving the things we do despite the pain, the disability and the limits the disease can create. I'm not a lesser person because I'm sick, and I don't think that what I have to offer is second rate. In fact, until I started to unpack the concept of disability pride, I had never questioned that! All I've ever asked is that people accept me as I am - however that is - and be respectful. And that started long before I got sick. It hasn't changed.
Many thanks to those who engaged in the conversations I had prior to writing this post, and for your contributions. You all helped me a great deal in clarifying what I wanted to say, and I hope I've written something that is true to what you've offered me.