Wheelchair: practical or "giving in/giving up"

Hi . The fear that using the wheelchair is somehow giving in or giving up is an understandable. People often feel they are giving away part of their autonomy. I have some secondhand experience with this issue and I can offer a different perspective.

My wife, Kelly Mack (a contributor here), was diagnosed at age two, 47 years ago - before modern treatments, with the damage to show for it. She started using a wheelchair as a child and had her first motorized wheelchair at 17. For her the chair has meant freedom and an increase in autonomy. She wrote in this article about how the wheelchair has helped her live her life: https://rheumatoidarthritis.net/living/explaining-my-disability.

For a story a little closer to yours I want to share this article from our contributor Amanda about how she uses a wheelchair to better enjoy events: https://rheumatoidarthritis.net/living/wheelchair-use-parenting. She also discusses how she explains it to her young daughter.

You need to do what you need to do to live your best life. At the end of the day, hopefully, your family and loved ones will see that you are trying to maximize experiences for everyone and what other people think is on them. Hope this information and the stories are helpful. Wishing you the best. Richard (Team Member)

Hi, !

I can't offer much more than the input Richard offered, but I hope your family is on board and supportive. Please know I know this is not the same, but my Aunt had to start using a walker as her Parkinson's has progressed. She fought it tooth and nail, but now that she's using it, it has actually given her more freedom and confidence. She still occasionally seems to worry about putting people out or what others might think, but I hope as time goes on, she can quiet those thoughts.

And, from her family's perspective? Oh, boy. It's kind of a relief. We love being able to include her in pretty much everything and to not have to stress about her falling, figuring out how she will navigate stairs and such. Mind you, this is all in the US and I know some countries just don't have the same ADA standards (one, because the ADA is specifically American and I realize that and two, you can only adapt ancient castles and cobblestone streets to a point). I do think most areas used to cruise traffic will have some accessibility accommodations, if you are cruising outside of the US.

And, selfishly? We have liked the extra storage her walker has and that we occasionally get the VIP treatment (access to elevators, shorter wait times, etc). I know that doesn't make up for the challenges of navigating activities with a wheelchair (or walker) and please know I am not making light of your (or my aunt's) situation.

But. If any of my words or Richard's help stop the spiral, then mission accomplished. I hope you have a WONDERFUL time and that your energy reserves can be spent having fun and making great memories!

Best, Erin, Team Member.

Hi again . Seeing 's post reminded me that Kelly has spoken about what a hard choice it was to start using a chair at the time. I don't think it is ever easy, whether a chair or some other assistive device. I hope stories about what a difference it can make in being able to maximize energy and the ability to get to some things help.
I can also tell you that from a tourist situation using a chair can open some new perspectives. Somethings are absolutely harder (I don't want to paint with rose colored glasses), but different paths can be interesting. For example at the Globe Theater in London to get to our seats we had to take a back way that took us through the costume area that most people never see. We've had a few experiences like this.
Wishing you and your family the best and please feel free, if you like, to update us. Richard (Team Member)