2:45 p.m. | Wednesday, Jun. 04, 2003 disability rant/experiences #1 I am reading a very excellent book called The Rejected Body: Feminist Philosophical Reflections on Disability by Susan Wendell. The title itself sounds intimidating and I wasn't sure I wanted to read it because I didn�t know if it would be too abstract for what I was looking for. I wanted information and perspective on women with disabilities. What people who were out in the world and had access to the information and experience said about being disabled. I think this is exactly what I got and more. As I read this book things that I have been thinking about (and sometimes verbalized) are set out as clear ideas and in ways that I can understand. I've been saying to myself as I read this book "Yes this is exactly how it is for people, myself included" or "Yep I saw myself doing that and thinking these things". It is validating for me what I didn�t think everyone else knew (well they don�t but here is someone else that finally does) and clarifying my ideas so I can express them. I don't think that happens very often for people with disabilities. That someone out there finally tells them that what they are feeling isn't wrong or abnormal; that they too have value and that a disability shouldn't be isolating and institutionalized. I also like the fact that this book tries to balance practical concerns with the concerns and desires of people who are disabled. It also helps me ask and answer questions about myself and my experiences with disability. The first part of the book talks about defining disability. There are of course many different types of disability and sometimes the line is thin. It also shows that everyone's experience with disablitity is different. I'm pretty sure that I'm pretty firmly on the side of the disabled. I have a progressive disease as well so I have experienced various stages of being disabled. Right now I'm in an electric wheelchair, I'm on a ventilator 24 hours a day and I need help with getting dressed, bathing, and going to the toilet. I can feed myself but I can't make my own food. Besides the muscle weakness my disease also causes fatigue, so even some things I could do physically are not possibly because I would become too tired. I also suffer from depression and anxiety. The next part talks about social factors contributing to disability. How society itself contributes to causing people to be labeled as someone with a disability. Not to say that if we change society nobody would ever be disabled. Obstacles within society and attitudes do limit to what degree someone can be a useful member. For example many people think that once you are disabled, that's it, you are done. They believe that disability is total (mental and physical) and that somehow being in a wheelchair causes everything else in your body to give up as well. When you are in a wheelchair people talk down to you and I've had people assume that I was hard of hearing, stupid or incompetent because I was disabled. Just because my muscles don't work doesn't mean my brain is also bungled. Some of the major social factors are caused by physical obstacles. Transportation, lack of accessibility, forced poverty and lack of flexibility in the workplace (either the place the person is already working or in jobs to be had). Lack of accessibility has always been a big issue, and people are always against something that costs money and only benefits a small portion of society. However, everyone is going to be old someday, your body will eventually appreciate ramps, doors that open electronically, handrails in bathrooms and beside slopes, lowered curbs, etc. It seems that people create buildings and sidewalks for the young and able not imagining that they too will one day not be as energetic or physically able as they are now. Our elderly population is growing, medical advances help keep people alive that would have died before but they are kept alive usually needing some kind of assistance to live (i.e. wheelchairs, canes, frequent rest, etc). Transportation is a big factor is getting around, especially for people in wheelchairs who don't have their own personal transport. In my city there is a bus that can be booked to take you to and from your destination, however, it's hit and miss as to whether you can actually get this bus for the time you need it. You also never know how long you'll be on that bus or if you'll get to your destination on time. It's frustrating and also leaves out opportunities to meet someone spontaneously somewhere or to just decide, "hey I feel good today, and I�m going to get out somewhere." I can see people thinking already, forced poverty? What on earth do you mean by that? It starts with the idea that people on social assistance (welfare) should receive less money than they would if they were working. They believe this is motivation for people to get a job. Of course, this would work if a person were able get a job. I personally would rather work than be handed money by the government. Unfortunately for me even if I were able to find a decent paying job I still have other expenses that run about a thousand dollars a month, which is a bit beyond most people's means in the regular workplace much less the type of part time work that I would need. I would like to take a quote from the book because it states the idea I want to state here better than I could. "Poverty is the single most disabling social circumstance for people with disabilities, since it means that they can barely able to afford the things that are necessities for non-disabled people, much less the personal care, medicines, and technological aids they need to live decent lives outside of institutions, or the training or education or transportation or clothing that might enable them to work or to participate more fully in public life� Failure of unwillingness to provide help often takes the form of irrational governing insurance health benefits and social assistance, long bureaucratic delays, and a pervasive attitude among those administering programs for people with disabilities that their 'clients' are trying to get more than they deserve." That is exactly what it is like to be on social assistance. They make you poor and then make you feel bad for asking for things you need. There is a list of things in the book that it become clear that the person in charge of helping you out financially or with service that you are talking to is working from when you talk to them. I again couldn't have put it better myself. 1. The client-applicant is ineligible for services until proven eligible. 2. The client-applicant's Vocational Goals (i.e. the thing you need money for) are outlandish, greedy, arrogant, must be trimmed down to appropriately humble scale. 3. The client-applicant's motivation in seeking services is, until proven otherwise, to rip off the system. 4. The function of the Agency is to facilitate (favorite word) adaptation (second favorite) of client to job (client to world), not the reverse. 5. The client is a fraud. 6. The client is helpless. That my friends, is exactly what it's like to deal with social services. (The woman who wrote that list was trying to get money for a second wheelchair, as her first had worn out. There was no provision in her insurance, they only paid for one a lifetime. It seems that they thought one wheelchair should be enough, you will either be cured or die before it wears out.) It is so exactly like it that it makes me sad because it means that this is not just me or this province, it's a problem across Canada and the United States. You have to fight for what you need and be treated like dirt to get it. I understand that some people ARE out to rip off the system, but one look at me would confirm that I am not one of those people. I won't mention too much about jobs, because I've never had one. However, I do think that if employers and workplaces were more flexible it would be possible for me to work part time and earn money for myself. If I could earn enough even for just personal expenses and for life enjoyment that would make me feel much more productive in society. I would like to say it would also take the burden off the government for supporting me, but it wouldn�t amount too much really considering the small amount they already give me for living life. I do think that in other cases if jobs were more flexible disabled people would have more opportunities to feel useful and contribute to their own financial needs. In essence people with disabilities are not only disabled by their physical or mental problems. Society, through government policies, through buildings designed only for the young and healthy, through lack of flexibility in employment. People who are disabled can still make a contribution to society, they are not their disability, and they still have abilities. Why shouldn�t people receive a decent amount help they need to participate in society like everyone else. In severe circumstances this may not be possible, but society should be open to letting everyone contribute and benefit society. It would take the burden from the government and families that are now expected to provide for people with disabilities completely. People expect that health care will be there for them if they have an acute illness and need care, but what about after when the illness subsides and you have to go home? There are no provisions for long term practical care that will keep a person in society and not isolated away from it. Can you imagine sitting in a care home that smell bad, with barely adequate food, following someone else�s schedule, bored and alone? Can you imagine being made invisible and valued as nothing just because you are less able to take care of yourself than other people? What do you think it would be like to all of a sudden become poor and unable to work and afford the things in life that you consider necessities, much less a few luxuries that everyone wants? What about not being able to get to places or attend functions because they were inaccessible or you couldn�t get transportation? Things that everyone takes for granted can be an obstacle when you are disabled. The physical disability seems to be only the start. Previous | Next

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Canada, Saskatchewan, Saskatoon, , English, , Female, 26-30, Reading.