Introducing my new wheelchair . . .

Introducing my new wheelchair (well new to me, it’s second hand.) I couldn’t be more excited. The purpose of mobility aids are to enhance balance, coordination, sensation, and strength while reducing the risk of injury, reducing pain/fatigue, and preserving energy.  I’m in the process of getting a custom wheelchair through insurance, unfortunately, it is a time consuming and expensive process. 

A few facts about wheelchairs and other mobility aids:

• There is a misconception among non-disabled people that wheelchairs are tragic, but in my experience, my wheelchair is freedom to move without pain and gives me the independence to do so much more than I could otherwise do. 
• I’m not wheelchair bound or bound to a wheelchair. I am a wheelchair user. 
• My mobility aids don’t disable me. The fact that my joints become painful, stiff, and immovable is disabling not my cane, crutches or wheelchair. 
• Having a wheelchair doesn’t mean I can’t or don’t walk, and in fact, most wheelchair users aren’t paralyzed and have some limited functional mobility. It’s more of a question of for how long and how safely can that person can be on their feet. 
• No, I’m not afraid that using my wheelchair will “weaken” me. I ride an indoor bike three days a week and plan to start physical therapy this spring. Avoiding deconditioning is an important aspect of managing hEDS. 
• As an ambulatory wheelchair user, I use a combination of aids: cane, forearm crutches and wheelchair. Sometimes you might see me without an aid, that doesn’t mean I’m faking or don’t need a mobility aid. 
• There’s a lot of mental math that factors into choosing a mobility aid every day. I prefer my forearm crutches to my cane for the stability and balance they provide, but it’s difficult to carry things. I often use my cane, but for sustained and longer distances or extended time standing and sitting, or days with more pain and joint hypermobility, my wheelchair may be a better choice.
• Sometimes I would like to be using my wheelchair, but unfortunately our world is not accessible to wheelchair users. I will likely use a combination of mobility aids when out and about for that very reason. 
• Walking whether with an aid or unassisted however doesn’t mean I’m magically no longer disabled or doing better. Hypermobile Ehlers Danlos Syndrome is a lifelong chronic painful condition.  
• I have a dynamic disability, meaning my energy level, symptoms and mobility needs change daily, sometimes hourly. I use different aids for different days. 
• Mobility aids are tools I use to manage chronic fatigue, pain, orthostatic intolerance, joint instability, injury prevention, energy conservation and a whole host of symptoms associated with my hEDS and dysautonomia. 
• My wheelchair is an extension of my body. Please do not touch it without asking and do not push me if I haven’t asked you to do so. 
• Don’t ask disabled people invasive personal questions. If you aren’t my doctor, you aren’t entitled to my medical history. 
• Disabled people do not exist to educate you. I happen to be a disabled advocate and educator but that doesn’t entitle you to ask inappropriate questions. 
• Needing a wheelchair doesn’t mean I’m incapable of doing things or that my condition has worsened. I honestly should’ve started using mobility aids earlier than I did. 

courtesy of A Day In the Life of a Person with a Disability

If you believe a mobility aid could help improve your quality of life, then use one! 

In the words of the late Judy Heumann, “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives – job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I'm living in a wheelchair.”

Sara L. Martin

ImpactOK2