Tag: Autistic Adult

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Disabled is not a bad word

shelleyautieauthor

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/

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My Truth

shelleyautieauthor

No marginalized group is a monolith. However, the news media, other systems, and society believe that marginalized groups are homogeneous. I represent only my experience, understandings, and interactions with people in the Disability community and other marginalized groups. I feel it is completely okay to disagree except as James Baldwin said, “when your disagreement is rooted in my oppression & denial of my humanity & right to exist”. So long as it leads to discussion that could lead to further learning, however, rants and screaming are not helpful, nor is listening just to reply. It is truly impossible for one to know everything about anti-oppression, even if it’s one’s area of interest.

Perfection

 As a settler who has grown up in a colonial, patriarchal, capitalistic, and white supremacist systems I am trying to unlearn these ways. Knowing this is what I grew up in, I’m okay with being wrong and I expect not to know everything. How is one to learn if they are (A) always right (B) comfortable in every situation? When making mistakes and unintentionally hurting another, it sucks, and I will not lie. What we need is to complete the repair work with the harmed individual if they are willing. Take aways from mistakes is not to get defensive when you are called out or in and most important is not to do said action again. This is the way I have learned, but not even trying to take a step because you are afraid of not being perfect is an actual form of procrastination.

My question is, how are you going to learn in the first place? No one is perfect at this, and perfection is a myth, but that is a topic for another day. But as someone who is a settler and understands, you cannot expect marginalized groups to teach us for free the non-whitewashed version of history. This is on you unless you are going to pay for someone who has advertised their services. I encounter ableism of some sort daily. I do not know how and what the experience of racism is, so it is a privilege to learn about it. To learn about the non-whitewashed history, one can start with the abundant books written by individuals who are of that particular marginalized group. (Insert link to my chart). Reading any of these books can be a start. There are also YouTube, Instagram posts, Facebook posts, and documentaries. At this point I would call it wilful ignorance not to know the non-whitewashed version of history. Or to understand that racism, homophobia, transphobia, and ableism is a daily issue for so many individuals.

Just a start

Reading the books on the list or many other books written is just a start. Or consuming any other information mentioned above. My question is, what is one going to do with the information once we have read the books? I have asked this question to myself frequently. I agree with all this information; it seems overwhelming. The information that is presented is not to make one feel guilty for what their ancestors did, you cannot change that. However, to show what our ancestors did (I am not immune from this) and the why of the way things are today. To leave the world in a better situation than when you were born into it. We cannot change the past, but we can change and address the present and the future.

What I currently do as a volunteer with a grassroots group in my city that is holding the different levels of government accountable to Reconciliation in Canada. Many social issues have gotten so much attention in the way of reports and research. As Michelle Robinson of @N8V_Calgarian states, we have given many reports and solutions. Action and follow through on the calls need to be taken. Volunteering can be very formal or informal and everything in between. How I started with the local Reconciliation action group was a call out on Facebook for volunteers. I have been with this group for the last two years and I have never felt so welcome and continue to learn from everyone involved in the group.

Besides volunteering, book clubs are great for learning about these topics. To meet other people who want to learn like yourself. The other people in the book club may be at various learning levels, which is great so that you can learn from each other. Besides learning from the book in the book club, the conversations are also where the learning can also occur. My note for this is if you are called out for saying or doing something that is improper (racist, homophobic, ableist etc.) please do not get defensive even though that may be your first reaction. For another person to say that what one has said is say ableist is hard to say this in front of a group, so respect what they have to say. From my experiences, they usually are not calling you ableist; it is what you said that is ableist, which is different. If one is to get defensive, one is losing out on a learning opportunity.

In it for the long haul.

So, your next question may be what you do in the long term. Ibram X. Kendi has spoken about being an anti-racist, which is a verb meaning to act. Before and during the Covid Pandemic, attending workshops is a way to gain knowledge. If one is unavailable to attend the workshop, they may record them and send the recording out. Or there are many talks on YouTube that address “ism”.

Another long-haul tactic is calling out jokes that are ableist, homophobic, racist, anti-Indigenous, etc. One can make it known that these jokes are unacceptable to be spoken around you. This may take some time and one may find that they may call out the same family member over and over, but hopefully they will eventually get it. Besides calling out jokes, one can start using inclusive language and be aware of your language and check your assumptions. For instance, do not assume everyone you meet is heterosexual. Also, support representation in the media and entertainment. Overall, individual action is where we need to start; we cannot wait for Governments to make the change.  

https://www.npr.org/2020/10/23/927100641/racism-is-death-anti-racism-is-life-says-author-ibram-kendi

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Myth-Every Disabled Person wants a cure & to be “Normal”?

shelleyautieauthor

My personal thoughts…

This blog entry does not speak for the entire disability community; like other marginalized groups, we are not a monolith. Even in the subsections of the disability community I belong to. I speak about my experience and my knowledge. This is my opinion and what I have spoken about to other disabled individuals. For the record, I do not want to cure my Autism even if they gave me the choice. Chronic pain is something I don’t want. Currently, I do not have a good relationship with my body. As I do not understand of what is going on in my body (example: being hungry or full but I cannot overeat). I would like to not experience headaches three or four days a week. I wouldn’t change who I am for the pain to stop. As a child, I felt like I was a complete disadvantage. If asked as a child or teenager, I would have taken that cure to be just like everyone else, not to be different now. That is so far from the truth

I don’t want to think like the majority. Albert Einstein, who thought to have been to be Autistic once stated: “the world will not be destroyed by those who do evil, but by those who watch them without doing anything” (1953 letter). A reason for not wanting a “cure” for a genetic disability is that many Autistics have a stronger sense of justice and loyalty. These qualities are very important to me. I really feel that no one person is better than the next person. Negative attitudes and stigma towards the disabled community may actually be why one person may want a cure, not the disability itself. 

Throwing a blanket answer would disservice the disability community. I would agree that diseases such as cancer should find a cure. As it is painful and kills many people all over the world. It makes sense to look for a cure for diseases that are painful and degenerative. I’m talking about disabilities that are not moving towards a shorter life span. Accepting who they are is more important than a cure.

Did you know Autistics and Attention Deficit Hyperactivity disorder (ADHD) individuals are at a significantly higher risk of mortality?. Autistics without an Intellectual delay, or as I prefer to say, ‘those with lower support needs’ (or learning disability in the United Kingdom) have similar health issues as Autistics with an Intellectual Delay. The only difference that was established is that the Autistics with the lower support needs had significantly higher suicidal risk and higher occurrence of comorbid mental health conditions than did Autistics with higher support needs. Now I ask, would this be because of the narrative from parents and agencies alike saying that “Autism” stole their child? I am not sure if I want to. Or is it the combination of Autism and Intellectual delay they want to be cured? That they cannot accept us for our wonderful selves.

Shelley’s Younger Sister …

In the past, individuals asked it of me “have you ever wondered what your sister (who has an intellectual disability) would be like if she was normal?” I have two responses to this. I just do not think like this. The other reason is not only would my sister’s life be 100% different, so would mine, so I could not fathom this change. She is wonderful the way she is. There is a blurry line between who is the teacher and the student. With the thought of quality of life, she is actually healthier and happier than I am. The second response is “What is normal?” From my observation, it is not a human trait but a setting on machines. Who decides what is normal? I don’t think anyone should have that duty because they always excluded anyone. 

Cure?

The cure narrative also leads me down the path of not understanding parents or other caregivers of disabled children. I understand that there is a grief cycle, as it is a loss of the child the parents thought they were going to have. Parents who have not accepted their child for who they are. I get grief does not have a timeline and is not linear and is difficult. When being stuck in the grief cycle, one is missing out on the wonderful living human being in front of them, not of an image or a thought of a human that only existed in one’s head.

My sister and I have the right to live and exist in this world. This can also be harmful when going down the cure route for genetic disabilities. Are we trying to create a world like Gattaca (a science fiction movie, circa 1997)? Why is there a need for every human to be the same? Our differences in story and experiences provide a different perspective from one another, so why must there be a monolith?

Take away…

Why do not want to be like everyone else? I find I like not thinking like everyone else. When spoken about, I say that I have disabilities. It seems attitudes in society and in accessible environments or unwilling to accommodate are harder than my Autism. I find it helpful that Autistic and neurodivergent individuals come up with different ideas and ways to work a problem. Sure, I have my good days and bad days, but I would not change it for anything or anybody.

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2774853

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Why Language is Important to me as an Autistic

shelleyautieauthor

“Why Language is Important to me as an Autistic” has come up many times for me to writing a blog and a book. This leads me to what I really wanted: to help change the thoughts and perceptions around the disability community. This is done by focusing on how language is used to describe individuals and the community. Changing one’s language is not enough to make genuine change for racism, homophobia, ableism, etc. Language is a good place to start though in one’s journey in understanding in the meaning behind the words.
When lending perspective, and educating others about language, we can start change how marginalized groups are treated and viewed. This will lead to true change. Individuals who want to make this transformation can do so because shifts start at an individual level. There are many disabled advocates who have produced books, blogs, vlogs, and podcasts that talk about this issue.

Why Language is Important to me as an Autistic

Why Language is Important to me as an Autistic

Language is so important; it is more than just syllables. Words, they have power and influence and when strung together, language makes people think. One may ask, how are they are just words? Let’s break this down a bit. My area that I have done a thorough analysis on and have lived experience is disability. Words and language have been used to dehumanize marginalized groups and the disability community did not escape this. Ableism is an over-arching concept around disability and discrimination. The continued usage of horrific words and euphemisms haunts every group of the disability community differently because, as we know, no marginalized group is a monolith. I would even argue within a subsection can be unique as well.

Language and the power of it

Back to Language and the power of it, words and phrases have been used to dehumanize disabled individuals as less than the neurotypical individual With this dehumanization firmly implanted in society, horrific acts have been allowed to happen to the disability community. For instance, take the medical labels ‘idiot’, ‘moron’ and ‘imbecilic’–these are medical relics of the past. These are no longer medical diagnosis used after the American Eugenics movement popularized them. This made the case easier for Nazis in the Holocaust to remove individuals with such labels. For instance, the experiments in the T4 program (Tiergartenstrasse 4) and under the Nazi regime this included infants to seniors. The sad thing is you still hear ‘idiot’ and ‘moron’ almost daily to describe others or even using these words to describe ourselves without knowing its horrific beginnings and corrupted use.

The Reality of Disability Language

Please do not pretend or think this is a thing of the past. Dehumanizing language and the horrific treatment of the Disabled and Mentally ill is still a thing of today. There is even a split within the Disability Community of whether people should identify using person first or the other option of identity first. Personally, I use identity first as I am Autistic you cannot separate it from me, it’s not beside me and follows me like a little dog. In my writing, I use both identity and person first when speaking about the community.
When I started my education back in 2002, this concept was laid out with authority, thus being drilled into my head to use the person first concept. However, times have changed. A good rule when talking with a person who has a disability is to first always start by using their name and then ask their preference on if they prefer identity first or person first because it is not unanimous. Even within the Autistic community, with the majority of Autistic individuals using identity first, some will still use the person first concept.

To Note

The Disability Community may be one of the few communities that family members/ parents and professionals get a say on how we label ourselves and even speak on our behalf. I have not quite figured out this reason. I used to do this as I followed the norm of the community with my younger sister who has an Intellectual delay, then I realized that this was wrong. Now I say that I am amplifying her voice for what she wants and needs when others do not understand what she is asking for.

Ableist language is so prevalent, one only needs to look at a television or social media and find that disabled individuals are objects of pity or charity. Even on the evening news, anchors will use the word “crazy” which really has taken on a life of its own. Or that shows and the news portray individuals with disabilities having to overcome a tragic and disabling condition. Or, conversely, presented as superheroes for doing typical daily living activities. My yuck is when the prom king asks (insert disabled person here) to the prom there is a name for this action the late Stella Young gave a TED Talk (Link below) where she called this “inspiration porn”.

The Euphemisms

Let’s talk about some euphemisms like: “differently abled”, “special abilities”, “handi-cappable”, “special needs”, and “differently abled”. These words just need to be forgotten. Based on my research, it is my understanding that the Disability Community did not make these words. These euphemisms are not for the community. Or saying something like “the only disability is a poor attitude”. This statement may sound great, but it really it devalues and belittles the disabled person’s experience. A “good attitude” will not change the fact that a wheelchair user cannot get in one’s building/ restaurant because of the lack of a ramp and accessibility aka stairs everywhere. Seniors who use walkers probably will have issues at well.
My change in attitude will not change the fact that certain smells make me sick and give me a headache or a migraine. I do not speak for the entire Disability Community; however, these words are not what we use in Disability Justice. I will not change my language to make another more comfortable with the truth. Especially if that person does not have a disability. Disabled/disability is not a dirty word. They have their place.

My reality

This is my daily reality, and I may have sounded harsh. I have said that I had a disability, and someone commented that I must be stupid. I hold 3 degrees, one being a Masters. Also, I stated I am an Autistic Person and I have actually had someone correct me saying I am someone with Autism. This person was a psychologist. Now I ask in what other marginalized groups will they be told how to label themselves? This comes back to language and how we, as disabled people, are viewed in the world. Now some may write this off as being “woke” or being politically correct, it’s not this. It is treating every human being with value and respect and their value is not determined by what they can produce but by who they are themselves.

Holocaust & Genocide Website

Stella Young’s Ted Talk