I feel the need to comment on this video for several reasons. First of all, I hate stories about disabled heroes; disabled people doing things that "normal" people find extraordinary. This woman makes good points about language and social theory, but I have a problem with the fact that she is clearly no longer "disabled" and barely impaired. She is white, she has money, she is intelligent and conventionally beautiful. She can work within society’s parameters without difficulty. She speaks about adversity as something that we can take and adapt to and recreate. This can only be done with resources, and resources cost money. Just having a disability is extremely expensive, even if you live in a country like Canada (and I do, but there is always much more than just a wheelchair needed). Some people are not born into money, have access to the more expensive parts of health care, expensive adaptive technology, aren't lucky enough or again, rich enough, to receive incredible supports (emotional, psychological, mental, physical). Some people don't look like "everyone else" and are looked at with fascination, scorn and patronization. They aren't smart, athletic or beautiful. Some people cannot function in society for a variety of reasons, often because society is designed around upper class white men (ask why the air conditioning in buildings is the temperature it is; the answer is men's suits). Employers do not want to accommodate the needs of anyone different, and if you were born disabled, or become disabled before you have a job/career with good insurance, then you have no insurance at all, to pay for medications, any type of therapy (physical or psychological), renovations to your home, adaptive technology like a wheelchair, a lift to get in and out of your home, up and down stairs, an accessible bathroom, "hospital" type bed, a lift to get in and out of bed, wheelchair, shower, bath, etc. There is no one size fits all adaptation anywhere.
Everyone is a different age, size, shape, stronger or weaker. Every disability affects everyone differently and there are so many different disabilities. For example, the exact place on the spinal cord that is injured or cut is where paralysis begins. This can change the type of care they need drastically. The differences between a paraplegic and a quadriplegic are huge, and there are several gradients between the lowest "number" paraplegic and highest quadriplegic (the number is at which vertebrae the spinal cord was severed, determining where your paralysis begins).Different sphincter muscles can be paralyzed "open or closed", and a variety of other things cause differences with the exact same type of paralysis.
I have muscular dystrophy, which says almost nothing about my disease and little about my disability, it says I have a molecular problem that affects my muscles. That covers hundreds of different diseases, and mine has only recently been recognized as Muscular Dystrophy and by the MD Association, because of increased scientific knowledge about the type of glycogen storage disease I have. There used to be 3 types of this disease depending on what age you are when symptoms appear, but now it seems there might be only two. Unfortunately, I don't fit into either of those two categories. It seems I always have to be the "special" one. I was the first diagnosed with the juvenile onset glycogen storage disease type 2 in Canada.
This woman feels strongly about helping children (not everyone is disabled as a child and has to start to get help as an adult) and changing perceptions, as well as definitions. This is important, but it is not the ONLY thing. Improving lives of those who don't fit into the mold of child or hero is important. Providing equal access to health care, medications and adaptive technology that is optimized for each individual is extremely important. Helping people go to school, work and live with a quality of life above the poverty line is extremely important.
The social model of removing societal limitations (barriers to mobility, etc...) is important, but it is also important to look at how impairments influence people's lives. I have a condition that causes progressive weakness and fatigue. Either one of these impairments is devastating in itself. Together, they rule my life. They have decided how long I was able to go to school, how much I sleep, whether I can work or not (that is just about no work at all), where I can go (not friend's houses that's for sure). In the winter snow and cold tell me when I can go out and where I can go. Cold stiffens my muscles into uselessness. Inactive and improperly functioning muscles make it difficult for me to live in temperatures others find quite adequate. I will never finish a university degree even though I am intelligent enough to do so. I will never have a job and make my own money. I will never enter the home of a friend or family to visit unless their house/apartment/condo has flat entry. (I am neither "useless" nor "mutilated", but my human potential is much much different than Ms. Mullins, directly referring to the TeDTalk video). The human ability to adapt is amazing. It is amazing what a person can get used to and deal with in their life.
Biology is not an adversity that you can overcome or turn into something positive. It just is. I am disabled and there is nothing that can be done to my body to make it less unable to move, be less exhausted, or to need fewer adaptations. There is nothing that can be changed in or about society to change that fact either. No matter how much I open myself to it, or "dance with it" (whatever that means), I will grieve every new loss of function, every change in energy that means I must spend more time in bed. I struggle with depression and anxiety. There are struggles in this life that cannot be fixed by attitude, no matter how you look at them. Depression can be situational, chemical, or both. My will to survive may keep me from giving up, but it will not change my prognosis. The only true disability is NOT a crushed spirit. A crushed human spirit is a terrible thing, but has absolutely nothing to do with physical ability. One needs a psychiatrist and/or psychologist, the other needs doctors that deal with the physical body, and there are hundreds of types of those. I have about 4 right now and I used to have more.
I cannot change my reality with my "spirit". A human spirit cannot abolish poverty, create health care equal for all or create equal opportunities in work, school or lifestyle. It is nice that her privilege has allowed her to use her "human spirit" to overcome her disability, but her privilege helped her just as much of not more. Her privilege will not create a space and reality that allows everyone to surpass what biology and economics has created for them.
I agree that words are important. I agree that being supportive and encouraging to disabled people is also important. However, they are not everything. They are certainly not the only thing. Physical, financial and emotional support is important. The big and inspiring ideas in this video do not inspire me. I think they may inspire those who are not disabled. She does not inspire me and other disabled "heroes" do not inspire me. What makes me want to keep going is the government wanting to support me with a quality of life income; programs that help me work from home; people that treat me like they would treat any of their other friends. I am not extraordinary. I don't feel that someone handed me a key to my human power. I live, like anyone else lives, this life.
