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Disabled is not a bad word

The words disabled, and disability is neither bad nor dirty. Yet society has tried to change these words by using cute fluffy euphemisms, that in the end, are quite harmful to the Disability Community (Example differently abled, handi capable). Disabled does not just describe a person; the word can also describe an environment. For instance, in a city that has an older downtown, you see many older buildings exempted from the accessible building codes of today. Meaning that many buildings have stairs instead of an elevator, thus if someone who is disabled can get into the building, we limit them to the first floor, still assuming the doors are wide enough for wheelchair access. Side note: many houses have stairs leading to the front and back doors, so houses are not accessible as well. This is even in newer communities. I have always been told it is cheaper to build for accessibility than to retrofit.

In the Merriam-Webster dictionary, a euphemism is the substitution of an agreeable or inoffensive expression for one that may offend or suggest something unpleasant”. With the euphemisms, it is not the disabled individuals who use these words or the community of disabled individuals, so what does that say? When one uses the following words: Differently abled, special needs, handi capable, (dis) abled—the only disability, is a poor attitude. Using this language minimizes and belittles the person who has the disability. They are sugar-coated, careful linguistics, designed to avoid the nature of the reality for those who are disabled and make room for the ableism problems we face today. Clear-cut words such as disability or disabled do not change the biological nature of a disability. I will not one day wake up with a positive attitude and not be autistic, it will not change the fact that loud gatherings can cause sensory overwhelm. And while I do not speak for the entire disability or the autistic community, I think I can safely say that we dislike these phrases and find that they are condescending and demeaning.

Intent vs. Harm

Let’s be real what the euphemism is really trying to erase disability from society, to create an easy pill for those not dealing with a disability, to swallow. Disability to those not living its reality is uncomfortable simply because it is unknown, but we have built a language to comfort them. Now maybe, this is not the intent when people use these phrases, they may not know what to say, however, it’s not about intent, it is about the harm done to the community or the individual.

I heard a great story for explaining intent vs. harm. Sam and Quinn are out together, and Sam accidentally shoots Quinn. Sam does not mean nor intend to shoot Quinn, but he is bleeding. If Sam stands there and goes on about how they did not intend to shoot Quinn, they are making the whole situation about them rather than attending to the harm that they caused, as Quinn is still hurt. In the end, it’s about the harm one does to the other person. Converting the words disability and disabled into euphemisms accomplishes nothing positive for the community.

It was not too far in our distant past that people with disabilities were associated with bad omens and witchcraft. This says something that if one does not understand what is happening, it is to be feared. I consider dealing with ableist micro-aggressions in others is more of a daily issue. For instance, people will say “get better soon” which is said when people have something like the cold or flu. However, when dealing with a chronic illness with or without the addition of a disability, one will never get better, only learning how to work around symptoms and flare-ups. Their intent is to be nice, but it can hurt the person with the chronic illness who can realize that they will never be the same as they used to be.

Reality

Eli Clair eloquently wrote about the concept of mind-body changes in his book “Brilliant Imperfection”. He wrote that the typical person fears the mind and body changes that happen when one becomes disabled. I am not a heartless person. I get it. Becoming disabled even for a short time can suck and can be hard. I will not pretty the words or my experience though. For me, it is not being dyslexic, autistic, or experiencing extreme anxiety that is hard, it is the attitudes of a society that we, as disabled people, will never be good enough and that we need a “cure”. I would prefer that ableism, racism, and homophobia be to end than not be Autistic.

Micro-aggressions, I would bet, are an everyday occurrence for people with disabilities. One may think saying: “I could never do what you do” is a compliment to a disabled person, in actuality, it is quite insulting. A disabled person has no choice but to do what needs to be done. They have to figure out hacks to make things work in our inaccessible world and still struggle, and have to rework these ‘hacks’ to make things ‘easier’. So, saying you could never do what they do… yes, it is insulting. Saying “I will pray for you?” is a micro-aggression, even if it seems like it is coming from a place of caring. When one says this, it assumes the disabled person is of the same religion or is even religious at all. My thought is the person saying this, can not accept the person for who they are, and the question is why can they not accept the person in front of them? Micro-aggressions are subtle, and they may even be unintentional, but the statements are still discriminatory to members of a marginalized group, especially those disabled.

Intersectionality and Disability

When I am talking about disability, I am not talking about just the white, Cis, straight community. Disability knows no man-made convention, such as ethnicity, class, gender, religion, political affiliation, or love. As Kimberlé Crenshaw defined intersectionality as a “study of overlapping or intersecting social identities and related systems of oppression, domination, or discrimination” (2) Many individuals in the disability community are exactly what Professor Crenshaw described as oppressed not just because of their disability, but other issues such as ethnicity, class, gender, and their expression of love.

What I can say is the disability community is the largest marginalized community in the world, with roughly 15% of the world’s population, according to the World Health Organization. That roughly works out to 1.1 billion people. Yet with this stunning number of individuals that are disabled in the world, why is so little known? Why in western society, via mainstream TV shows, movies, books, and even news, are we not seeing a community that is so vast? This needs to change. If it was not for the BIPOC women and other marginalized women I have read and listened to, I really would not understand what Disability Justice Movement is or what grassroots organization truly is, and this is coming from someone who deals with disability. Racialized individuals are the ones that started the Stonewall Riot and have been at the front of many, if not all, movements. I suggest mainstream society has not given due to what we owe to racialized women and the LGBTQTIA2S+ community.

(1) https://www.merriam-webster.com/dictionary/euphemism

(2) https://researchguides.library.syr.edu/fys101/intersectionality

(3) http://eliclare.com/

Book Reviews

22 Books about Disability I read in 2o22

1. Demystifying Disability: What to Know, What to Say, and How to Be an Ally By: Emily Ladau

2. Crip Kinship: The Disability Justice & Art Activism of Sins Invalid By: Shayda Kafai

3. Funny, You Don’t Look Autistic: A Comedian’s Guide to Life on the Spectrum By: Michael McCreary

4. We’re Not Broken: Changing the Autism Conversation By: Eric Garcia

5. The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma By: Bessel van der Kolk

6. Care Work: Dreaming Disability Justice By: Leah Lakshmi Piepzna-Samarasinha

7. About Canada: Disability Rights By: Deborah Stienstra

8. Asperger’s Children: The Origins of Autism in Nazi Vienna By: Edith Sheffer

9. Autism in Heels: The Untold Story of a Female Life on the Spectrum By: Jennifer Cook O’Toole

10. Crip Theory: Cultural Signs of Queerness and Disability By: Robert McRuer

11. Feminist, Queer, Crip By: Alison Kafer

12. How to Be Autistic By: Charlotte Amelia Poe

13. The #ActuallyAutistic Guide to Advocacy: Step-by-Step Advice on How to Ally and Speak Up with Autistic People and the Autism Community By: Jenna Gensic, Jennifer Brunton

14. Brilliant Imperfection: Grappling with Cure By: Eli Clare

15. Decarcerating Disability: Deinstitutionalization and Prison Abolition By: Liat Ben-moshe

16. Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body By: Rebekah Taussig

17. Disability Politics and Theory By: A. J. Withers

18. Complex PTSD: From Surviving to Thriving By: Pete Walker

19. The Power of Disability: 10 Lessons for Surviving, Thriving, and Changing the World By: Al Etmanksi

20. Unmasking Autism: Discovering the New Faces of Neurodiversity By: Devon Price

21. The Future Is Disabled: Prophecies, Love Notes and Mourning Songs By: Leah Lakshmi Piepzna-Samarasinha

22. The Disability Experience: Working Toward Belonging By: Hannalora Leavitt

Blog

How Disability effects everyone

Taken In the Rockies by Shelley

I believe many in society do not realize disability affects everyone, including themselves. There is a saying “temporally abled, permanently disabled,” It is the truth which is often harsh. So, you may ask how disability affects you if yourself are not a person with a disability. The largest marginalized group in the world is the disability community. When access needs are taken into consideration and met for the disabled community, everyone benefits. You are probably asking “how?” Two examples that come to mind are curb cuts and elevators. Society intended curb cuts for individuals who use wheelchairs. However, they help people who are pushing strollers, drivers who are delivering packages, and people who are moving throughout their day. Elevators and escalators are accommodations for people with disabilities as well and everyone benefits. Another example… How many times has an automated door helped when your arms are full? Imagine trying to push a full shopping cart out of a normal swinging door—my point is that things we may or may not take for granted, exist because the disability community needed to navigate the world in a way that betters their lives and it turns out, it helps all of us.

Let’s talk numbers.

The World Bank puts about 15% of the world’s population as having a disability, which is roughly one billion people (World bank April 14, 2022). Because of Covid-19 and other factors, the number of people which are becoming disabled is rising. In the disability field, something well known is at some point a person is likely to experience some type of disability, if only temporally (i.e., breaking one’s bone). The chances of a disability event increase as an individual ages. This is one way disability affects everyone.

The Center for Disease Control and Prevention (CDC) states 61 million adults in the USA live with a disability. About, 26% of Americans in the south have some type of disability. There are 6.2 million Canadians defined as having a disability. This is roughly 22% of the population 15 years and older. Currently, women with disabilities are being diagnosed at a higher rate, 24% compared to men at 20% (2017). Canada had a unique statistic: 71% of individuals who identify as a person with a disability reported having 2 or more types of disabilities. Only 29% of people had only one disability. The United States also broke down the statistic parts of the numbers for seniors, and 2 out of 5 are affected. In the US, 1 in 4 women have a disability. Not a shocking statistic because of racism and ableism and the history of these two, is that in that 2 in 5 non-Hispanic American Indigenous, Alaska Indigenous have a disability. This is the intertwinement of racism and ableism which cannot be separated.

The Why

There are many layers to the disability community, therefore it affects everyone. Just like every other marginalized group, we are not a monolith, nor do I speak for the “whole” disability community. I speak to my experiences and what I observed with over 20 years of work experience in the field, education, and personal experience. These layers, unfortunately, go unnoticed as the disability community is most often lumped together, which hides our unique diversity. There are many conditions that some individuals do not consider a disability. Which is often in the Chronic Illness category, but most Chronic Illness are constant or reoccurring flair-ups. In a “Public Opinion Poll on Chronic Illness in America By Kirzinger, Munana, and Brodie, found “6 in 10 say they or someone in their immediate family have a chronic health condition that requires ongoing medical treatment”, (Link below). In society, chronic illness is more seen as a sickness rather than a disability, and to some, invisible, where symptoms can be “multi-casual, unpredictable and unstable” states Ria Muherji in their article (Link below).

Mental illnesses are another category under disability and, depends on whom one talks to in the mental health community, it can be viewed either as a disability or not at all. Mental illness is moving slowly towards the way in which Canadians view it—as a disability (Link below). Negative stereotypes of disabled people in society are the reason for the divide. There are many quotes where the meaning is in the details, and this is where the truth lives. Let’s be honest: individuals are afraid of the unknown of those who are different. Expressed in the micro-aggressions of “I would rather be dead than disabled” or “I could not do what you do”. These are not unique statements. What does this say to someone of the disability community? “hey I rather be dead than in your shoes”. No wonder there is such a divide on who identifies as part of the Disability community, as it layers those with disabilities in silence or shame, all because of stigma and stereotypes. Individuals may avoid a diagnosis or won’t say they have a disability, or even ignore symptoms and signs that may indicate a mental illness and think they are fine.

The definition of disability is not static and has many components depending on where one looks. For instance, if one looks up the legal definition, it can be different depending on which law one looks up. Americans with Disability Act (ADA) has a different definition than the Social Securities Act. The legal definition differs from the medical definition that the medical establishment uses. When trying to look for the World Health’s definition of disability I found that in a few reports that there is no consistent approach or definition across countries around disability and that disability is complex, dynamic and multidimensional and contested. Even within the same country across disciplines classifications and measurements are different.

Conclusion

Whether one acknowledges that disability affects them, it does just based on sheer numbers. An interesting fact… wearing glasses is not looked at a disability anymore, but just something that is needed. Eye surgery in some states, consider cataracts surgery an elective. Do you think vision—an ability that allows a person to see near and far objects is elective? Is it not something that would affect everyday life? I write this because I want to give awareness to the sheer size of the disability community, to soften the stigmas and stereotypes. Let us get rid of the “world is not built for some people.” And create a world that is built for all of us… because as we have experienced, when people with disabilities’ access needs are considered, everyone wins.

https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html

https://www.who.int/health-topics/disability#tab=tab_1

https://osa.gse.harvard.edu/chronic-illness-not-widely-viewed-disability-needs-change

https://www150.statcan.gc.ca/n1/pub/11-627-m/11-627-m2022062-eng.htm

https://www.ipsos.com/en-ca/mental-illness-considered-by-more-canadians-as-disability