The importance of accessible fun for people with disabilities
Living with Friedreich's ataxia doesn't erase my need for joy
Written by |
My husband, Dave, and I have been trying to think of fun, inexpensive things to do this summer. That sounds simple, but my disability from Friedreich’s ataxia (FA) makes it complicated. Sometimes the hardest part of disability is the way it changes ordinary pleasures.
We live near the ocean and close to many beautiful beaches, but wheelchairs and beaches do not mix easily. Beach wheelchairs exist, and many nearby beaches have them, so that part is not impossible. However, it does require planning and sometimes rental fees. The bigger issue is my body’s poor temperature control. I overheat quickly and easily. Dave also does not enjoy sitting on the beach, even though we both love the ocean. So a simple idea like “let’s go to the beach” can turn into a puzzle with too many pieces.
That is what can be hard to explain to someone who has never had to plan around accessibility. From the outside, it may sound like a small inconvenience: Go earlier, bring shade, find a boardwalk, choose a different beach. But every option comes with questions. Is there close parking? Is the path smooth? Is there shade? Is there an accessible bathroom? Can I leave quickly if I get too hot or tired? Will Dave spend the whole outing managing logistics instead of enjoying himself? It can’t be a spontaneous thing; fun often requires planning.
By the time we answer all of that, fun can start to feel like work. That is why we often default to hanging out on our deck. Our deck is nice, and we are lucky to have it, but my soul still yearns for an adventure, even a small one like going to the beach.
Accessible fun often costs more time, money, and emotional energy. A casual outing may mean calling ahead, checking websites, reading reviews, and hoping that “accessible” truly means accessible. Sometimes we encounter a hidden entrance, awkward seating, full or poorly placed accessible parking, or an event setup that makes disabled visitors feel like an afterthought.
Disability reaches into the small moments. It changes how spontaneous I can be, how much energy it takes to leave the house, and whether an invitation feels exciting or stressful.
Fun is not optional
What makes this especially frustrating is that people sometimes treat fun like a luxury for disabled people. Appointments, equipment, safety, and getting through the day matter, but they alone do not make a life feel full. Everyone needs laughter, beauty, novelty, and something to look forward to. Disability does not erase the need for joy.
I wish more communities treated accessible fun as part of inclusion from the start. Parks, beaches, theaters, restaurants, festivals, trails, museums, and public events should welcome disabled people without making us fight for a basic experience. Clear information, shade, seating, smooth paths, accessible bathrooms, quiet spaces, and flexible options all make fun easier. These changes help disabled people, but they also help parents with strollers, older adults, and anyone who needs more ease.
Dave and I are still figuring out what summer fun can look like for us. Maybe we drive along the coast with the windows down, find a shady place near the water, go out for ice cream, or visit boardwalks where we can enjoy the ocean without fighting the sand. Right now, I am trying to find a local dark sky area so we can be amazed by the stars. I am learning that fun does not have to look a certain way to count. It just has to give us a break from problem-solving and let us feel like ourselves again.
When every enjoyable activity feels too difficult, expensive, or risky, my world shrinks. Fun pushes back against that shrinking. It reminds me that I am more than my diagnosis. It gives Dave and me memories that focus on what we share, not just on what I cannot do.
Finding accessible fun is hard, but I believe it matters because joy is not extra. Joy is part of being human.
For people with disabilities, fun can restore us, reconnect us, and remind us that our lives deserve more than survival mode. I do not want every outing to feel like a test of patience or endurance. I want moments when Dave and I can laugh, explore, and come home with a story that has nothing to do with barriers. Accessible fun gives us that chance. It gives us room to feel ordinary, adventurous, and fully alive. And that matters.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
Clester oda
Pretty much every small town around us has a town festival. We try to see as many as we can . Most have really good entertainment.
Then there is the county fairs....generally they dont cost that much to get in and since my wife is in a wheelchair we often get in for free.
The last few years it has become a normal item to see at all these places a tailer dedicated for the disabled to use the restroom and/or privacy to care for anything unusual like fixing my wifes ostomy.
Then there are the large flea markets to "sightsee" or get things we need for cheap or do some Christmas/birthday shopping.
Since most things we like to do is outside .... by far the most useful and most used thing I made for my wifes wheelchair is a mount for one of those large beach umbrellas. That's been a lifesaver for both of us and the dog....for both shade and to avoid the occasional unexpected downpours.
Also we've been to many state parks in several states that have at least some accessible "hiking" trails and so far most have had good parking and facilities near these trails.
For vacation.... Gatlinburg Tennessee several years ago spent several million dollars making everything accessible including a paved "hiking" trail in the "Great Smoky Mountains" thats nearby and runs along a beautiful stream.
We like to fish also....many small lakes have accessible "piers" along with facilities nearby and good parking . Some states even dont require fishing licenses when using these piers. Many of the ones in Florida even have fish cleaning station right on the pier....stainless steel table with a sink and running water....even the ones on the ocean or gulf. Just make sure to check if that particular pier is a state pier before going.
Michigan UP has a beautiful beach with a boardwalk that goes down to the water line just for wheelchairs....just have to be careful of sand that gets washed up as you near the water....again, good parking and facilities.
Nearly everything we do is free or very little money to enter .
Weve even been to many off the wall places and haven't had an accessibility issue....like a huge hour long corn maze in Kentucky in the fall...even they had a huge accessible facility.
Very rare to go someplace that we've had accessible issues....and with the umbrella giving us shade , outdoor events are no longer an issue....might add i also installed a power port on her chair for a fan , her fishing pole, and a 12volt blanket for the colder events like Christmas light shows.
Our biggest problem is deciding where to go and do we have enough money for gas...lol
Just this last weekend we decided to try a new small restaurant in a nearby town and we didn't even know they had a festival going on so we got a two fer. 😁