10 Years Of Tonia Says - How Do You Combat Internalized Ableism?

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Here we are again for another week, celebrating 10 years of Tonia Says! 

This week's prompt is: How Do You Combat Internalized Ableism? Feel free to add your thoughts in the comments! 

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[Image: A selfie of a white woman -- Tonia -- smiling a closed-lipped smile from 2016.]

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Julie:

Tonia and Tara were the first people to introduce me to the term “Ableism”. I’d never heard this term before, and hearing it was… interesting.

Of course, with my lifelong physical challenge, I’ve experienced “ableism” likely more than I ever realized. It’s a part of what happens when moving through a world built for the ‘majority’.

Because the term is still so new to me, “Internalized Ableism” is like “Level Two” of ableism.

1) What is Ableism?

2) How has that also been internalized for me?

I think I’m going to start with a formal definition.

Ableism:

(Merriam-Webster) Discrimination or prejudice against individuals with disabilities.

(Oxford) Discrimination in favour of able-bodied people.

When I think of internalized ableism, the question I most ask myself, that takes the most effort to let go of, given the complicated nature of my severe and chronic fatigue, in combination with other health issues, is “Am I legitimately tired (or sick, or injured or symptomatic…) and needing more rest and less of certain activities, or am I being lazy?”

Many times, I know the answer to this question is: Yes, what you’re feeling is true fatigue, injury, or illness, and your judgment call for more or less rest and less or modified activity is wise. But deciphering the amount and nature of activity or rest can be difficult, as sometimes increasing activity CAN push things in a positive direction.

When I’m being plagued by self-doubt in the middle of a dilemma like this, I often picture how I might react to a friend in similar circumstances, if they were to describe to me how they were feeling. When I hear a friend struggling with similar physical, mental or emotional struggles, I will much more easily validate their feelings and their dilemma, and encourage them to take the rest they need, and gently test, as they feel ready, what they may be able to handle.

If I’m not able to work through my doubts by picturing what I might say to a friend in similar circumstances, nothing is quite as validating and helpful as speaking with someone else who is facing or has faced similar challenges. It is SO much easier to let go of internalized ableism when I am speaking to, seeing or reading about a similar experience to my own!

It’s why I’m grateful for those in my circle who also have CP, disabilities of different kinds, and life challenges of different kinds.

Thank you so much, Tonia, for filling your blog with so many of your personal experiences, and opening a window of opportunity for both the disabled and able-bodied community to see and hear through your experiences, and those you’ve invited to share what life with a disability is like from the inside.

A couple mottos that have helped me on tougher days:

“Resting today, is investing in a better (feeling) tomorrow”

“My value is not in what I do, but who I am”

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Kayla:

“You shouldn’t be using that stall. That’s for handicapped people.”

Although I wouldn’t learn the word to describe this random woman’s comment to me in a Perkins bathroom when I was about seven years old until much later, this was the first instance of ableism I remember experiencing. And boy, is it an understatement when I tell you that it wasn’t the last. 

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“You could do it if you just tried; you aren’t even trying.” 

“I'm unable to provide you with details and complete assurance about the level of accessibility throughout the tour.”

“Before I talked to you, I thought you were [the r-word].”

These are just three examples of many instances of ableism I have experienced, as I’ve been disabled my whole life. Being treated this way by strangers, and sometimes even dear ones who don’t realize what they’re doing until I explain, absolutely takes its toll. [At the time of this writing,] we’re nearing the end of Disability Pride Month, and it doesn’t escape me that as a disabled bisexual person, I heard way more about LGBTQ+ Pride Month than I ever did about Disability Pride Month. (And trust me, it’s not due to a lack of following disabled content creators, who were pretty much the only people who I DID see posting about Disability Pride Month). 

So, how do I deal? One of the biggest parts of my disability identity development that really helped me see things in a new light was making other disabled friends, but this wouldn’t happen right away. There were some other disabled kids in school with me growing up, but I was always in mainstream classes, and I barely ever saw or interacted with them. What’s more, I’m sure a part of me avoided contact with them because I wanted in the worst way to be able-bodied. 

The problem with allowing that want to fester, though, is the fact that it’s never going to happen. It is not useful for people to feel bad about me, the disabled kid orphaned at two years old, because pity doesn’t change anything about my situation. I can acknowledge the tough parts while also recognizing that I still have privilege, power, and a voice. My grandpa who raised me never did so with kid gloves. He’d joke that the speech therapists taught me too well because now I never stop talking, but one way I combat internalized ableism is by using my voice. Anyone who is friends with me can bet their bottom dollar that they will be invited to a non optional crash course in Ableism 101. A not insignificant part of the problem with ableism is that able-bodied folks are often not malicious, simply oblivious that what they’re doing is ableism. 

By using my voice and any platform that I have to share why certain things are ableist, I feel like I’ve left the world just a little more educated on matters of ableism than I found it. 

Disabled friendships were crucial to my disability identity development. No one gets disability like my disabled friends get disability. Through cultivating these beautiful friendships with people that I hold dear, not only do I find myself educated on aspects of ableism I was unaware of due to not experiencing them directly, but I have also discovered language to describe my experience that I didn’t even know existed. Just recently, I was describing how sometimes it takes me some time to figure out exactly how I want to distribute my body weight and balance when I’m going down a step to make sure that I don’t fall or lose my balance. My awesome friend Tara not only knew immediately what I was referring to, but helpfully supplied me with the term motor planning. That is exactly what I do. Although I will still most likely have to explain this term to any able-bodied folks I use it around, it is such a validating experience to have a shared language with folks I share a community with. 

It’s still a battle. No matter how many disabled folks are developing a platform through social media these days, the ADA was still only passed in 1990. I have disabled friends who are older than the ADA. If I had been born seven years earlier, there would have been a part of my life where I was not protected by law. 

And even though the ADA is there, it’s still not perfect. Disabled people still do not have marriage equality if they lose their health and financial benefits the second they are married. Disabled people still frequently have to meet a certain low income requirement in order to qualify for services. There is a caregiver shortage. It’s exhausting to have to fight systems for basic equality and deal with societal attitudes and stereotypes, from people that say disabled people don't contribute to society, to people who simply view us as inspiration porn to make them feel better about themselves. 

Even so, I am always comforted in the knowledge that I am not alone in this. I am forever grateful to Tonia for always making me feel seen. I am forever grateful to Tara for carrying on her legacy and making me smile every day. 

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Tara:

To combat internalized ableism, the importance of disabled friendship cannot be overstated. When encountering ableism of any kind – whether it be Original Recipe Ableism:

Able-Bodied Person Exclaiming To A Disabled Person: You’re too pretty to be in a wheelchair!

Lateral Ableism:

Disabled Person To A Fellow Disabled Person: That accommodation is not for you!

Systemic Ableism:

A lack of ramps or railings or the presence of steps; a broken or nonexistent elevator in a public place.

Internalized Ableism:

Disabled Person Telling Themself: I’m so stupid and lazy, I can’t believe I didn’t complete that task!

In each of these scenarios, the innate understanding of disabled friends is so crucial.  We have a “Come As You Are” mentality that we honestly and truly mean. The gentle space we allow each other to process, yell, cry and rant – or to process, yell, cry and rant for each other – is so intensely healing. I love my disabled friends.

But this is Tonia Says. And honestly, one of my biggest ways to combat internalized ableism is to remember Tonia’s words. To listen for her voice.

In a personal note from 2019, she wrote:

When you doubt yourself, remember your health and peace of mind and safety all matter. You matter. You should not have to submit yourself to awfulness and you DON’T [deserve it]. 

You deserve kindness, dignity, respect, accommodations – LOVE. Because you ARE worthy of all that and more.

❤️,

Me

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Thank you so much for helping remember and celebrate Tonia. Tune in next Monday for another post. (Next week's post will feature difficult subject matter. Please read and write with care.)

Next week's prompt is: Tonia’s Last Blog Post Idea: I Am Dying, And People Keep Telling Me To Have Hope And Hang On For Others. (Write a post or a letter responding to Tonia.)

Please send any submissions you would like included in next week's post to tarasays1@gmail.com by Sunday, August 18th at 10 PM Central.