Episode 51: This Makes Me Uneasy

TRANSCRIPT OF “THIS MAKES ME UNEASY”

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MALE VO [00:03]
This is Bad Attitudes.

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LAURA [00:20]

Hello friends and strangers! Welcome to another episode of Bad Attitudes: An Uninspiring Podcast about Disability. I’m your host, Laura.

I’ve noticed an uptick in a certain practice among disabled people — and especially from parents of disabled children — that makes me nervous.

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As always, I want to remind you that disability is not a monolith. My experience as a disabled person is going to be different from the experiences of other disabled people. I am one voice for the disabled community but I am not the only voice.

If you’ve been listening for a while, you know that I have an Etsy shop where I sell stickers, prints, and shirts featuring my original designs and artwork. [throat clearing] FairyNerdy.Etsy.com. As one does, I’ve been working on improving my shop, optimizing my SEO, updating tags and titles, business-y stuff. While doing so, I noticed a lot of products on Etsy targeted toward the disabled community. Products that “advertise” the user’s disability.

Examples include those seat belt covers that are becoming increasingly popular with parents of autistic children. They announce the child is autistic and may be resistant to assistance from first responders if they are involved in a car accident. They’re meant to be helpful to first responders in the event that other passengers are unable to help them manage care for the autistic child.

I understand why these are popular with parents. If you, as a parent, are unable to advocate for your child or give necessary information to first responders, you want to take every precaution to make sure that those first responders are going to take proper care of your child. What makes me uneasy is the presence of these products at all other times EXCEPT during this narrow set of circumstances.

Another example: A number of sellers are producing decals to go on cars that say things like, “Please leave room for my daughter’s wheelchair.” Consider all the information you have just conveyed using that one sticker. You have a daughter. That daughter is disabled. That daughter uses a wheelchair. You, as her parent, are going to be focused on your daughter and burdened by getting her and her wheelchair into or out of your vehicle. I don’t relish being a fearmonger, but really think about how someone with nefarious intentions could take advantage of that information. How they could prepare to accost this person and their daughter in a parking lot. How they could lie in wait for a distracted parent.

The same could be done with the information imparted by the seat belt covers. I’ve seen some that have very little information, simply stating “deaf,” for example, but have seen others that have the person’s name, date of birth, condition, medications, etc. Tons of information that we wouldn’t willingly impart to a stranger without good reason, yet anyone who looks in a car window and sees this cover is going to be able to access. Children are not that savvy, and anyone who is able to talk to them using personal information is going to immediately garner trust. “Hey, kid’s name. Your mom told me your birthday is this date! I’m going to take you to get your medication for this condition.” 

I wonder if the people making these things have EVER watched a true crime show. Because they should.

I can’t hide my disability. I use a wheelchair and generally speaking when you see me, you see it. But I don’t believe in advertising my disability when you can’t see it. When I’m in my car, no one can tell I’m disabled. So I don’t drive with my parking placard hanging from my rearview like I’ve seen so many people do, and I don’t have permanent plates indicating my status as a disabled person. I don’t inform people of my disability unless it’s absolutely necessary. In the event of an accident, I wear a medical alert necklace. It lists my primary disability and my major allergies, along with a number that corresponds to my Medical Alert file, which will inform first responders of other necessary information. But none of that information is visible to the casual passerby.

I understand wanting your child to be safe. I understand wanting them to get the best possible care. But WHY would you put all of this private information out there for literally anyone to see? A disabled child is already vulnerable. Parents should be doing everything they can to make them LESS vulnerable, not more so.

Although, I guess this is kind of a pointless conversation considering social media. The amount of information I know about some people’s kids is mind-blowing. Not just close friends’ kids, but acquaintances’ kids, kids of people I met once who found me on social media. I really respect the people who keep their kids off social media because it has got to be HARD. When everyone else is showing off how cute/smart/funny their kids are and you just want to rub your kid in their faces, but you DON’T. Major props.

There are some situations where I think announcing a facet of your disability can be helpful. For example, if non-verbal children and adults want to wear a button or a badge that says “non-verbal,” it’s probably really helpful in their day-to-day dealings with the public. (Assuming said public pays attention.) Same with people who are deaf or hard of hearing. If you wear a button that says you’re deaf, it would — theoretically — be much easier for the hearing people around you to acclimate to communicating with you. Again, this depends on the people around you paying attention.

But wearing some kind of insignia to indicate you’re non-verbal or deaf is far different from putting all of your pertinent medical information on display. I truly do not understand the impulse to have this kind of information be public-facing. Is it because we’ve been trained to cough up our details? Do these people not understand the potential for danger? Or, do they just not care because, well, you can find out just about anything about a person if you’re willing to do the research?

If you want to use a seat belt cover to help your disabled child in the event of an accident, be smart about it. Share ONLY the most important details. Not their name. Not their birthday. Not the minute details of their condition. I feel like a seat belt cover that says, “autistic” or “non-verbal” or “deaf” is enough to do the job. Properly trained first responders are going to be able to work with that without your child’s life story.

Am I the only one who looks at these kinds of products and thinks, “Stranger danger?” Do you use these types of products for yourself or your child, or are you more like me, content to keep the details close to the vest?

Thanks for listening and I’ll talk to you in the next one.

[08:47]
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