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Ableism by Myotonic Dystrophy Expert Ann S Woodbury

When I graduated from college in 1980 (yes, I’m old) I graduated with a degree in the college of Social and Behavioral Science. I didn’t realize it at the time but I recently realized that all of my education was taught through the view of Ableism (discrimination in favor of able-bodied people.) With my degree that emphasized Child and Family relationships, I thought that I was prepared to be the best mom ever. Then I started having a family. As my children grew and we faced difficulties I was totally unprepared. My background had taught me to pay attention to typical milestones of “normal” child development. Sometimes my children didn’t fall into these normal milestones but since I could tell that my children were trying their best I decided to not focus on these. In fact, I just ignored my textbooks. It wasn’t until my third child, Michael, was followed every six months by a government program “Children with Special Health Care Needs” was I made aware of the fact that he wasn’t meeting his normal milestones. Michael didn’t walk until he was 14 months old which was 2 months later than the average but they informed me that it was still close enough so not to be worried. When, at 2 ½ years of age Michael couldn’t talk I didn’t worry about it because he was very interactive and trying. It wasn’t until an acquaintance that was also a school teacher told me that she thought that he was talking but couldn’t say the hard consonants that I sought help. Sure enough, after evaluation, he had a normal vocabulary but he wasn’t able to pronounce the consonants that make words intelligible. Michael was provided with a speech therapist that came to our home and brought activities for him to do to teach him how to pronounce the sounds that he wasn’t making. To my awareness there were no questions asked as to why he wasn’t making these sounds. This started our journey with speech therapy for Michael for the next 20+ years. My children were atypical but also typical. They played with the neighbor children, went to school and church and did what children normally do. But, they also had difficulties. My oldest, Warren, didn’t like school and he seemed to not be compliant. When he was confronted by school and church leaders to conform he would act out. He talked a lot and seemed to challenge authority. Warren got angry easily. He was extremely bright and could easily learn things. He got good grades and took first place in a Geography Bee in 7th grade. But he hated getting out the door for school and we were both usually frustrated by the time that he got to school. Because I had only been educated about children that were normal I figured that there was something that I was doing wrong. I took parenting classes and read a lot trying to adjust the way that I responded to Warren, never realizing that he would eventually be diagnosed with Aspberger’s. The Aspberger’s diagnosis didn’t happen until he was an adult. My youngest, Chad, never crawled. He scooted around on his back by arching his back and balancing with his head and pushing with his feet to get around. He had a bald spot on the back of his head from this until he learned to walk. Now, in hindsight, I can understand why my children had these issues. They were all related to the Myotonic Dystrophy (DM) that they would eventually be diagnosed with. Through all of their years I always tried to figure out where I was failing them. I knew who they were and they were good stuff so I figured that it must be my failings. It never crossed my mind that they had a disability or that I was living in a culture of Ableism. Understanding Ableism is new for me. But by understanding it, I have more information that helps me as I interact in the world around me and it gives me a whole new way to look at my family, in hindsight. You might find this useful too. I found some helpful information on ableism at this link.

  • Here are some Examples of ableism:

  • asking someone what is “wrong” with them.

  • saying, “You do not look disabled,” as though this is a compliment.

  • viewing a person with a disability as inspirational for doing typical things, such as having a career.

  • assuming a physical disability is a product of laziness or lack of exercise.

What is ableism?

  • Ableism perpetuates a negative view of disability. It frames being nondisabled as the ideal and disability as a flaw or abnormality. It is a form of systemic oppression that affects people who identify as disabled, as well as anyone who others perceive to be disabled. Ableism can also indirectly affect caregivers.

  • As with other forms of oppression, people do not always know they are thinking or behaving in an ableist way. This is because people learn ableism from others, consciously or unconsciously. Bias that a person is unaware they have is known as implicit bias.

  • Implicit bias against people with disabilities is extremely common. An older study found that 76%of respondents had an implicit bias in favor of people without disabilities. This included respondents who had disabilities themselves.

  • In the study, ableism was among the most common and strongest forms of implicit and explicit bias out of the ones the researchers tested for, surpassing gender, race, weight, and sexuality. It was second only to ageism.

  • Hostile ableism: This includes openly aggressive behaviors or policies, such as bullying, abuse, and violence.

  • Benevolent ableism: This form of ableism views people with disabilities as weak, vulnerable, or in need of rescuing. This is patronizing and undermines the person’s individuality and autonomy, reinforcing an unequal power dynamic.

  • Ambivalent ableism: This is a combination of both hostile and benevolent ableism. For example, a person might start a social interaction by treating someone in a patronizing way, and then switch to being hostile if the person objects to their behavior.

An important thing to note about ableism is that it affects people differently depending on how others perceive their disability. For example, how people discriminate against those with visible impairments is different from how they treat those with invisible impairments. Other factors that can influence this include:

  • whether an impairment is physical or cognitive

  • whether or not a condition is well known to the general public

  • whether it has a history of being stigmatized, as this can lead to the development of specific myths, stereotypes, or slurs

  • Education discrimination: Schools refusing to make disability accommodations, failing to understand a disability, or trying to “teach” a child not to have their impairment are all examples of ableism in education. For example, a teacher might punish a child for their dyslexia rather than adapt how they teach.

This bias has serious consequences. It can cause medical professionals to ignore the lived experiences of their patients, incorrectly blame new symptoms on a person’s disability, or withdraw medical support in the belief that nothing they do will help. It can lead to barriers to getting healthcare, as well as avoidable illness and death.

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