I speak out and talk about disability rights and chronic illnesses and disabilities quite frequently these days. I know many have noticed. I know some may wonder why now? Did my diagnosis of RA really spur me into this fanatic who speaks out on disability rights and who constantly speaks up about the hardships that chronic illnesses and disabilities have on people? The answer is yes...and no. My diagnosis gave me the courage to speak up but these issues have been on my heart for a long time. These words are words that I have swallowed back time and time before, never having the courage to speak up. My diagnosis simply gave me the courage I lacked; my diagnosis gave me 'proof' of an illness and disability that has wracked my body for years. For so long, I have felt as if I had no claim to the disabled community or the chronic illness community. I had no diagnosis. No doctor knew what was wrong with me and many gave up on me and pushed me to the side. Despite the symptoms that often took over my body, I felt as if I had no 'proof' for those around me. I felt as if those around me felt like I was making it up or exaggerating. If doctors hadn't been able to discover anything wrong with me, then there must not be anything wrong with me. Who would believe me if the 'professionals' couldn't even find something wrong with me? So, I remained silent. But, now, I have a diagnosis. Now, I have the 'proof' of my illness - the expertise of a doctor to back me up and to say that I do, indeed, have a chronic illness. I have dealt with this illness for years. The diagnosis does not change that. It simply brings affirmation to my years of sickness...years where I remained silent. So now, I am no longer silent. I speak the words that have been caught in my throat for so long. I speak up for the rights of a community that is so often ostracized, neglected, and cast aside, a community that is often deemed by society as unworthy of rights.
There is a proposal coming together right now that pushes to use social media (such as Facebook and Instagram) as a means of identifying if those on disability are 'truly' disabled. This is not okay. It may sound okay; If people are abusing the system and collecting disability money when not disabled, they should be found out and punished. Of course this makes sense. The problem, however, is that people with disabilities and chronic illnesses are not always bedridden. We enjoy life when we can. We go out with friends when we can. We are allowed to have fun times just like any able bodies person. A picture on social media of a disabled person out enjoying a day at the lake with friends does not mean they are not disabled. There are not many people who post pictures on social media when they are struggling with their disabilities. I don't post the pictures of me in bed, ice packs, heating pads, and pillows surrounding me as I deal with a flare up of my illness. I post pictures of me when I look good and when I look happy...as do most people. It is already a difficult feat to get on disability. I know this. Anyone with a disability or chronic illness knows this. To add to this difficulty the need to constantly watch what we post on social media in case the social security administration decides that we post too many happy and 'healthy' looking pictures is unacceptable. For many with disabilities and chronic illnesses, the money they receive from disability is how they survive. Without it, they would not be able to afford food, housing, sometimes even medications. Without it, they would die. I am all for making sure that there is not fraud when it comes to receiving SSDI. However, there are already extensive measures in place to avoid this fraud. In fact, fewer than 4 out of 10 applicants are awarded disability benefits. Investigating someones social media posts and pictures in order to 'prove' they are not disabled is violating and insufficient evidence to deprive someone of their income (usually their only income) that keeps them alive, keeps them surviving, keeps them from homelessness and death.
This is only one example of society's absolute disregard for the lives of disabled peoples. I urge and encourage you to be aware and to do your part to support the rights of disabled people. We are human beings and we ask to be treated as such.
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