AFOs (Ankle-Foot Orthotics) offer many stroke survivors freedom by letting us safely walk. They lift our affected feet as we take our steps so our toes don't drag on the ground and trip us. They give us the mobility that foot drop threatens to take.
But they're not usually very attractive. And finding shoes that work with them is a challenge because they need to be bigger and wider so we can squeeze a weak foot and brace into the show.
A common question I hear from survivors is, "Where can I get shoes that aren't so ugly?"
Well, I don't always have great answers to that, but Lainie Ishbia does. Laine runs the Trend-Able blog and is one half of the emBRACE IT podcast. She's an expert on finding and making accessible fashion, and she joins us this week to share her story.
Bio
Lainie Ishbia is a blogger and podcaster helping people with invisible and visible disabilities look good and feel good. Her website at Trend-Able.com offers tips and strategies for literally and metaphorically balancing fashion and physical needs. She develops tips for find accessible clothing options. If you can't find it, she offers tips on modifying clothes to make them work.
Lainie lives with Charcot-Marie-Tooth disease. It's a hereditary, degenerative nerve condition that today impacts her hands and feet. She began wearing AFOs on each foot at age 30 and mourned the loss of sleek heels at the time.
Since then, she's turned around her perspective, leveraged skills acquired through a career in social work and now helps folks with disabilities live their best lives with confidence, self esteem, and passion.
You can find more details of Lainie's story here.
Disability and Lifestyle
Living with disability (visible or not) is a lifestyle. It shapes what we wear, the careers we pursue if able, and the social activities we pursue. And we learn so much along the way.
I often say I now know way more about neurology and neuroplasticity than any marketing guy should ever know.
And now I know the foot bed in a shoe may be removal. And I know there is a thing in a shoe called a foot bed.
Lainie's fashion blog goes well beyond just the particulars of clothing and includes tips and strategies on how to navigate the world, like 5 Cocktail Survival Tips for Unsteady Girls or A Girlfriend's Guide to Dating with an Invisible Disability.
Disability Pride Month
July is Disability Pride Month.
I'm a little fuzzy on the origins and scope of the celebration, but my understanding is it started in 2015 in New York City to recognize the importance of the Americans with Disabilities Act.
How ought we celebrate it in 2021?
It will depend largely on your personal comfort level. Don't let anyone tell you you're doing it wrong.
The first thing is to recognize, accept, and believe with all your heart (original, mechanical, acquired from someone else, etc.) that there is no shame in being disabled.
Say it out loud if you can. There is no shame in disability.
We are people with lives to live. Sure, those lives may be different from the lives of the temporarily abled, but they are no less valuable.
Second, you can celebrate disability pride by simply being visible. By being a part of the world, participating in it and taking up space in it just like any temporarily-abled person. Don't let people pretend we don't exist. Don't hide from people just because our presence makes them uncomfortable.
Third, when someone talks about diversity and inclusion, make sure they are talking about disability in that, too. A diverse organization with no disabled people is not a diverse organization.
Fourth, share your story with folks. You don't have to share it with the world in a podcast, blog or YouTube channel if you don't want to. But you can share it with people in your community and family. The woman who hosted the graduation party Lainie talked about in our interview (probably) wasn't trying to keep disabled people from having a good time at the party. It's likely the challenges Lainie faced never even occurred to her. The more we tell our stories, the more people will think about accessibility.
That's just a few ideas to consider. Ultimately, you can celebrate in the manner that feels most comfortable to you. If that means you walk, roll, or hobble down the street in a parade or protest, great. If it means all you can do is remind yourself there is no shame in disability, that's great, too.
Disabled is not a bad word. There is no shame in it.
Have a fantastic Disability Pride Month!
Hack of the Week.
Lainie suggests picking up (no pun intended) mini-lint-rollers, like these.*
These have sticky sheets used for getting lint or pet hair off your clothes. If you struggle with manual dexterity, though, they can also be great for picking up change at a store counter. They can also be a nice solution when that pill box spills on the floor and Plaxix and Lisinopril go everywhere!
"But, Bill, why wouldn't I just pick things up with my unaffected hand?"
There are a few reasons.
First, a toned or spastic hand can probably still hold a lint roller, and if you have some shoulder control, you can move it. One of the most important tools in recovery is to use your affected limb as much as possible in practical way. Just because it's no longer fully connected to your brain is no reason not to make it work.
Second, especially when I need to get something on the floor, I often need to use my unaffected arm to balance or stabilize myself. If I get in an awkward position and my unaffected hand is busy, it's much more difficult to not fall.
Everything in life can be therapy!
Links
Where do we go from here?
- Check out the Trend-Able website here and the emBRACE It podcast in your favorite podcast app.
- The first issue of the Strokecast Newsletter goes out this week. If you haven’t already signed up you can do so at http://Strokecast.com/news
- Share this episode with an Occupational Therapist or someone else you care about by giving them the link http://Strokecast.com/Trends
- Don't get best…get better.
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