Yet another post told in memes, not because it's funny, but because if I don't laugh, I'll cry...
On a recent trip to Texas, I experienced several of the more "tropish" interactions of being an ambulatory wheelchair user and I thought I'd take the opportunity to share so that you can avoid making someone feel like I did. Ableism, it's a thing. It's real. People don't realize they have it. Educate yourself!
"You're walking! It's a miracle!"
So, I'm sitting on the shuttle to the airport and my husband loads my wheelchair on. The driver looks around with a confused expression and asks, "Whose wheelchair is that?" I awkwardly raise my hand and he throws his hands up in the air and says, "It's a miracle!" I think he thought he was being funny. He wasn't. The reality is, if I couldn't get out of my wheelchair we couldn't use their service because IT IS NOT ACCESSIBLE. Shame on them, not on me for knowing my limits and choosing to use a mobility device so that I'm not stuck at home all the time. Ambulatory wheelchair users are real and are valid. Not all wheelchair users are paralyzed.
"I wish I could sit down and have someone push me around!"
We were waiting in line for breakfast and a young mom who had two kids in a stroller looked at me and actually said this. I'd seen it in memes, but never heard it myself until then, and I couldn't believe someone would be so thoughtless. How did I react? Of course, I tried to explain to her that she did not, indeed, want to be in my situation. Did she believe me? No. I think all she could see was her exhaustion and all she put into pushing those little kids around, wishing someone would care for her like that. I sympathize with her, and I want all those things for her. But boy, I wish I could take back the hurt and invalidation I felt when she said that.
What happened to you?
While you might think you're just showing interest, in reality, this is an incredibly personal question. It would be like saying, "Which of your parents had that horrible nose?" or, "How do you go to the bathroom?" In my case, I believe the person was asking because of their follow-up statement that comes next, but it really doesn't matter. It's never polite to ask someone why they are in a wheelchair, never.
"If you just take this essential oil, you'd be cured!"
You see, Sam really thought he could help me. He thought he had the magic cure.
Spoiler alert, he didn't. You see, I'm pretty well educated on my medical conditions. So is the extensive team of doctors that I have working with me. Odds are, if taking turmeric and black pepper oil would cure this, someone would have mentioned it by now! You wouldn't believe how many people think that they have the magic cure you've been looking for. Having to fake-politely accept their advice, or try to argue with them that they actually have no understanding of your condition, is never fun.
"You don't look sick"
Or there's the classic:
I know people are probably just trying to be nice when they say this, but it is truly invalidating. It makes somebody feel like they have to prove their illness to you, like you don't believe them because you can't see it.
You can tell someone they look nice without having it be a dig. Try, "Boy, your hair looks pretty today!" or, "What a nice outfit!" Not, "I can't tell by looking at you that you're in excruciating, unending pain and haven't slept well for years. Are you sure?" This is probably the one I hear the most. That along with, "Well, at least you look good!" Like that is supposed to make me feel better. It doesn't. It just makes me feel unseen and unbelieved, again.
Or when they don't talk to you at all
Have you ever approached a person in a wheelchair and their companion pushing them, and addressed your questions to their companion? Have those questions ever directly related to the person in the wheelchair? Yikes! In case you didn't know, being in a wheelchair means you have mobility issues, not hearing or cognitive issues. Now, those things could be true as well, but usually people with those additional disabilities are used to how to cope with when someone speaks to them. You are ALWAYS better off addressing someone in a wheelchair directly about things that involve them. "What would she like to drink?" "I don't know, why don't you ask her?"
Here's the Thing: You may have noticed a touch more saltiness in this post. This is definitely a sore spot for me and one I'm still learning to deal with, with grace. My disability is still new enough to me that I'm not secure in it. I still question myself all the time, then these types of statements make it SO MUCH WORSE! I'll leave you with a couple of more videos by the lovely Jessica Kellgren-Fozard that flesh out the issue much better.
Radical tumor removal is not always possible because of the critical brainstem or diencephalic locations of some tumors. Tumor progression and eventual death are likely in such patients. Stereotactic radiosurgery for pilocytic astrocytomas part 1: outcomes in adult patients Kano et. al. So my posts are usually preceded by a scripture verse, often an encouraging one. Today I needed to give you an insight into what I've been experiencing. From the time I was diagnosed with a brain tumor, about a year and a half ago, I was reassured that it was a "WHO grade 1 benign" tumor. I, mistakenly, took this to mean that it wasn't a big deal. Even when I was told in June that it had grown "slightly," I thought that meant they'd zap it with radiation and that'd be the end of it. Guess what, I was wrong. When my June MRI revealed growth, I was referred to the Tumor Center for treatment. Fearing a long, drawn-out process, I was relieved when they scheduled all my...
How I look has changed a lot over the last year. Just under a year ago my head was shaved for brain surgery and over the last year my hair has been growing out. I’ve had to do a lot more resting and less exercise and activity so I’ve put on weight. I had arm surgery a couple of months ago which left me with a splint for most of that time and now an arm with 13 scars on it. I look so different. A big part of me has worried so much about how my husband sees me. Does he still find me attractive? You see, he’s not one to voice things like that. Words of affirmation were not used in his home growing up and they are not a part of his standard vocabulary. It’s funny though, as I read today’s verses I realized that he has, in fact, been telling me I’m pretty, just in a different way. Let your beauty not be external - the braiding of hair and wearing of gold jewelry or fine clothes - but the inner person of the heart, the lasting beauty of a gentle and tranquil spirit, which is precious in Go...
This incredible trip has taught me so much, and I feel like I'm just beginning to unpack it. I'm certain that these lessons will overflow into future posts as well, but I wanted to give you an introduction to the Community First! Village here in Austin, Texas. As shared on their website: Community First! Village is a master planned neighborhood that provides affordable, permanent housing and a supportive community for men and women who are coming out of chronic homelessness. A development of Mobile Loaves & Fishes, this transformative residential program exists to love and serve our neighbors who have been living on the streets, while also empowering the surrounding community into a lifestyle of service with the homeless. This is the actual truck originally used in street outreach, now retired as a decorative memorial This amazing endeavor began over twenty five years ago. As a part of their street outreach, Alan Graham and his partne...
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