One of the first times Jesi Stracham spoke to another wheelchair user after her accident was in an inpatient lab with a peer mentor. This was about a month after the 2015 motorcycle accident that broke Stracham’s back and left her paralyzed from the waist down.
“She told me all the things that she did: she had a partner, she worked full-time, and she water-skied,” Stracham says, which gave her the confidence boost she needed to get back into the highly active lifestyle she had before her accident.
To think that she could still be an athlete gave her hope for other goals in her life: motherhood, business owner, personal trainer. “That’s a powerful thing to understand,” Stracham says. “And having confidence in yourself and who you are gives you the confidence to be a social person with a disability.”
Nearly 1 in 4 people in the U.S. live with some type of disability. And if you’re one of the millions of wheelchair users like Stracham or you have other mobility challenges, you’re more likely to experience social isolation and loneliness compared to folks without a physical disability.
But there are things you can do to stay engaged with the people in your circle and in your community.
Give yourself time to adjust to life with a disability, especially if your mobility changes are new and serious, says Jennifer Hankenson, MD, a physical medicine and rehabilitation specialist (physiatrist) with Yale Medicine in New Haven, CT.
That doesn’t mean hide yourself away. Instead, explore social situations in a way that feels comfortable to you – perhaps with only close friends and loved ones – as you build confidence.
If you use a wheelchair, prosthetic limb, or other assistive device, give yourself time to figure out its limits, dangers, and capacities. That way, Hankenson says, you can test out different scenarios “in a safer environment with safer people” before you mingle with strangers.
Tell your doctor if you have trouble adjusting to the physical barriers brought on by your disability. An occupational therapist can help you navigate these practicalities.
In addition to physical barriers to socialization, people with disabilities often wrestle with a change in identity, says Mary Schramer, PhD, a clinical psychologist at Northwestern Medicine Marianjoy Rehabilitation Hospital in Wheaton, IL.
This shift in how you see yourself and the role you play in other people’s lives may change your desire or ability to socialize. “Sometimes people develop a mindset of, ‘I don’t want people to see me like this. I’ll go out when I recover,’” Schramer says. “That keeps them isolated, and it limits their ideas of what they’re capable of.”
But part of adapting to life with a disability means getting over the fear of how others see you, Schramer says, and to ask yourself: What do I value at this point in my life, and why? And how can I get the same enjoyment from people or activities in a way that accommodates my disability?
Mental health resources, like group or private therapy, can help you “figure out how to live your best life and overcome some of the things that are holding you back,” Schramer says.
Everyone’s social interests are different. But if you enjoy athletic events, “the sky’s the limit” when it comes to the kinds of adaptive sports programs that exist, Hankenson says.
Your recreational choices may be limited based on where you live, but see what pops up with a simple internet search for “adaptive sports near me.” Ask your doctor or occupational therapist if they know of any accessible programs in your area that you can join or watch.
Over the years, Stracham has competed or participated in activities such as water skiing, snow skiing, wheelchair curling, hand-cycling, swimming, archery, and rock climbing.
In addition to solo sports, Stracham uses the wheelchair skills she learned from a physical therapist to go camping and explore the same trails as non-disabled hikers, often with her roommate who’s also a skilled wheelchair user. She also runs a nonprofit called Wheel With Me Foundation to connect and support wheelchair users.
And even though the two can use the same skills to jump on a curb or get over roots and nature, “people come up to us sometimes and are like, ‘Do you need help out of here?’” Stracham says.
If sports aren’t your thing, many theme parks, zoos, and museums are wheelchair accessible, Hankenson says.
Here are some additional tips from Hankenson on how to find accessible ways to socialize:
- Research wheelchair accessible travel guides and destinations.
- Find accessible vacation packages, including cruises.
- Bring an advocate with you when you travel or go out.
- Ask other people with disabilities where they like to socialize.
- Tell your state representative or congressman about accessibility issues.
Federal law requires equal access to public accommodations, including transportation. But travel can be a challenge depending on how you decide to get to your destination. If you fly and need a wheelchair or other accommodations, it’s best to inform the airline ahead of time.
“The bus system and train system are actually pretty good,” Hankenson says. “But air travel can be a real barrier because they do not make it easy for people who rely on a wheelchair for mobility. … The aisles are so difficult.”
Some of the things people with disabilities may struggle with – like bowel and bladder mishaps – aren’t “normal” in the non-disabled world, Stracham says. “And so when you’re around other wheelchair users, you can have an open and honest conversation without fear of judgment because we’re all in a similar space.”
Stracham found her roommate and other “wheeled friends” through Instagram, Facebook support groups, and adaptive sports programs. She also hosts group chats, calls, workouts, and a quarterly book club through the Wheel With Me Adapt Fit Facebook community. But you can always look online for like-minded folks in your area.
“The more that you get involved with (the disability) community, the more you’ll find people you can relate to and the easier it is to live this life,” Stracham says. “And they’re going to have tips, tricks, and shortcuts that will help you learn how to adapt.”
Social media and the internet can be a good place to find other people with disabilities, “but it can also be a dangerous place,” Hankenson says, which is why she urges people to connect with carefully vetted support groups. Ask your doctor or other community members if you’re unsure.
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2023-10-25 19:35:41
