Why Ableism Is Such a Huge Issue for Those With Illnesses or Disabilities
The other day someone I’ve known for a long time read my blog. I never discussed much about Lyme disease with him, so I wasn’t surprised that he didn’t really know how to respond after reading it. However, what he did say made me think. He told me he thought it was great that I’m able to convey my pain and that it must be cathartic for me. While I have found writing about my experiences helpful recently, I feel he completely missed the point of this blog.
Pain is important. Expressing our pain can get people to pay attention, understand and sympathize with other’s experiences. Expressing and understanding someone’s pain is one of most unequivocally human things about us. It can bring us together, but pain can also tear people apart.
It is important to understand that people who live with complex conditions, such as Lyme disease, often experience pain in numerous ways. We can experience physical, psychological and emotional pain as a result of symptoms, but it’s much more than that. We can experience pain because of lost friendships, difficulty with work, school, family and more.
People often stay silent about their pain and trauma because of the shame surrounding conversations of mental health and pain in general. However, it simply furthers the silencing of people like myself. Therefore, yes, I talk about pain. And yes, it is uncomfortable for me to talk about, but I feel it is too important to ignore. But, it is also more than that.
See, when I talk about pain, it isn’t purely about pain. I don’t feel the need or desire to hide anything about my experiences with illness anymore. I prefer to be honest because for years I felt I had to hide my difference, my otherness. I’ve learned to embrace all of who I am and that means my pain too. However, expressing my experiences with pain in this blog is a catalyst for a much bigger discussion: ableism.
Pain and Social Movements
Pain is imperative to social movements. We organize because of our pain. It is because of pain we become angry. That anger pushes people to protest, which forces people to hear it. Pain is often deeply connected to injustice, and at the same time it can be a catalyst for change.
When I talk about my own painful experiences and emotions I do not want to center the conversation around my pain. It is to start a conversation around why people like myself who live with chronic or invisible illnesses or disabilities can end up with so many painful experiences. Too many people are systematically oppressed and can feel worthless, devalued, silenced, invisible or abused by others because we live with chronic or invisible illnesses/disabilities in an ableist society. That is a problem.
What Is Ableism?
What is ableism? Oxford English Dictionaries defines ableism as discrimination or prejudice against people with disabilities in favor of those considered to be able-bodied. For instance, those who are healthy can have a “normal” life without accommodations because they do not have any physical, emotional, development or psychiatric disabilities are considered able-bodied people. In addition, stopableism.org describes ableism as a “set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.”
We live in an ableist society in which able-bodied people are considered the norm, which means that the public and private spheres, education, social work and more are built for able-bodied people while excluding and ignoring those with disabilities. This often results in people with disabilities facing barriers in their public and private lives in many different ways.
It is an incredibly complex topic, but the point is we have a problem. Despite the fact that many people have decided to ignore the very difficult and traumatizing history about how we treat people with disabilities in this country, it still is a problem. In the United States during the 1950s, people were still being tortured and forced into having unethical and immoral surgeries performed on them because of a perceived disability or mental illness in psychiatric institutions. The Americans with Disabilities Act wasn’t even passed until 1990, which is less than 30 years ago. While we may want to believe we have moved past living in an ableist world, we have not.
Ableism in the United States
We live in a world where if you can’t work or go to school, you are seen as “lazy,” “crazy” (ableist language, FYI) or “asking for attention.”
We live in a world where everyone assumes everyone is able-bodied – that they are healthy, can hear and see, walk (at all or long distances), drive, work full-time and still exercise, eat well and have energy to socialize, have a family and do a hobby on the side. People assume if you can’t “do it all” then the problem is with you, not the expectations set on individuals.
We live in a society where we think if we eat well, exercise and do everything “right” we will be healthy. If not, we believe doctors are all-knowing and will be able to “fix” us easily. If they can’t though, doctors have a habit of blaming the patient. Just like everyone else.
We live in a society where children, your peers and their parents will ghost you and your family the second you are sick because illness is seen as a taboo topic in U.S. culture.
We live in a society that mocks and ridicules people constantly for not controlling their lives and bodies. For instance, over the years many people, children and adults have bullied me because I couldn’t do the same physical activities they could.
We live in a society where the US government may cut off health care for people who have pre-existing conditions. If I didn’t live in Massachusetts, without the ACA I couldn’t be on my parent’s health insurance. My pre-existing conditions would make health insurance hard to find and much costlier. And at the same time, I have to pay thousands of dollars out of pocket for treatments that insurance companies will not cover because the CDC and IDSA ignore the existence of chronic Lyme disease. If I didn’t have parents to help me, I wouldn’t be able to get treatment.
None of this is OK or should be acceptable to people. Yet, it happens. Thus, the pain I have felt is not the problem. It is a symptom of a much bigger problem: ableism. So let’s keep talking and shouting and hopefully something will change.
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Thinkstock photo via LanaBrest.