Chronic Diva

And why we need them.

Once upon a time, not so long ago, I was ignorant of what disability might mean from person to person. There was this idea that people who were disabled couldn’t walk- meaning they were paralyzed in some way, or they were mentally handicapped in such a way that they could not function in society. It was a pretty black and white interpretation. Even when I was diagnosed with bipolar, anxiety disorder and PTSD, it never occurred to me I was disabled. Even though I would come unglued every time I received a summon for jury duty and needed to have my psychiatrist write a letter explaining why I could not go, or when I was forced to drive on the freeway to a place I was unfamiliar with (and at times familiar with) prior to my seizures and my grip was so tight on the steering wheel they’d go numb, even though assault scenes on T.V. triggered panic attacks and fits of crying, I never thought I might be disabled. I still did not see myself as someone with a disability when I received my handicap placard in the mail, because of my physical limitations and pain that made it difficult to walk through a parking lot to get to a store. And I still had difficulties seeing myself as disabled even after the purchase of two canes, which I mostly use when outside of my house, feeling safer as I try to manoeuvre through unfamiliar landscapes. What I have learned is that disability comes in all forms and just because I don’t use a mobility aid all the time doesn’t make me any less disabled and doesn’t mean I don’t need it.

 

Wheelchair: As defined by the Oxford Dictionary: “a special chair with wheels, used by people who cannot walk because of illness, an accident, etc.” [https://www.oxfordlearnersdictionaries.com/definition/english/wheelchair?q=wheelchair]

 

What I love about this definition the most is that it explicitly says that wheelchairs can be used by people who cannot walk because of illness or an accident. It never mentions being paralyzed. I get so upset when I hear about those within my community who are harassed by -ableds, because they are seen getting up from a wheelchair to get in the vehicle and have the audacity to call it out as though they were doing something illegal. Here are some types of invisible illnesses that might cause a person to need a wheelchair:

 

·       Rheumatoid Arthritis: Individuals suffering from this type of arthritis may use a wheelchair to help them burden some of the pain they are having. This would include pain in the lower limbs, where the individual can no longer walk or stand without the assistance of a wheelchair. Use of wheelchair varies from diagnosis, not all people suffering from rheumatoid arthritis will require a wheelchair. [https://www.karmanhealthcare.com/medical-health-issues/rheumatoid-arthritis/]

·       Epilepsy: It occurs as a result of electrical signals being sent in the brain, which causes an overload that results in ongoing seizures. People with epilepsy vary in symptoms, some people who suffer this illness just stare blankly during a seizure, and others have violent convulsions as a result. Use of a wheelchair prevents concussions that might be sustained during a fall. [https://www.karmanhealthcare.com/medical-health-issues/epilepsy/]

·       Neuromuscular Disorders: include a variety of conditions, such as muscular dystrophy, multiple sclerosis, and ataxia, which result in degeneration and atrophy of muscle or nerve tissues. [http://disability.illinois.edu/instructor-information/disability-specific-instructional-strategies/mobility-impairments#2]

·       Fibromyalgia: a form of “soft tissue” or muscular rheumatism causing constant pain in muscles and ligaments. Inactivity, depression, anxiety, chronic fatigue and sleep loss are common. [http://disability.illinois.edu/instructor-information/disability-specific-instructional-strategies/mobility-impairments#2]

 

This is not an exhaustive list by any means. The point here is, people can use wheelchairs for many reasons and the use of them can drastically alter their quality of life.

 

 

Canes and Walkers

 

No fancy definition here. Canes and walkers provide balance and support to the individual using them, assisting in avoiding falls and possibly helping to keep weight off an injured foot, leg, or hip. The difference between cane and walker is: you can support up to 25% of your weight on a cane and 50% on a walker. [http://www.networkofcare.org/library/10_canes_walkers.pdf] Many of the reasons listed above, save for epilepsy, may require the use of a cane in the infancy of the illness, before needing to move on to a walker as the illness progresses. This is not an exhaustive list of reasons why a person may need to use a cane or walker. The point again, that these mobility aids can drastically alter the quality of life, giving a person freedom where they were limited before out of fear of falling.

 

I’ve shared with you why mobility aids may be needed and that they can drastically improve the quality of life of someone struggling with a disability, but here are a few reasons how:

 

·       Access and convenience: If you only feel safe in your own home, you can become isolated and chronic illness and pain are already incredibly isolating. If you are unable to walk around at venues because your pain or illness makes the walking around difficult, a mobility aid can open doors for you. We all have lives that we want to participate in and mobility aids give us that ability, whether it’s a lot or a little. The choice is there, just like in the lives of an -abled person.

·       Caregiver safety: We often speak about them, and we rely on them every day. It’s a tough job being a caregiver and one that only becomes monumentally more difficult when a caregiver is also responsible for transporting a loved one. Accidents can happen and mobility aids can lift this worry from the caregiver, allowing for them both to enjoy more things to do and places to see when the person feels safe getting around.

·       Quality of life: When you look at access and convenience and caregiver safety in conjunction with the individual’s health which precipitated the need to begin with, you are looking at quality of life. Being able to get out easier can give a person purpose where they might have thought there was none, and purpose can contribute to a higher, over-all, wellbeing. We need that.

 

My parting thought on this: Mobility aids can be an absolute game changer for people with chronic illness/pain and other disabilities. Just because you can’t visually see the impairment, doesn’t mean they are “cheating.” It also doesn’t give you the right to call them out, humiliate them with a note taped to their car, or anything else. It’s already traumatizing enough losing your freedoms and abilities due to chronic illness/pain or accident, we don’t need your side commentary about it. You may find yourself in the same situation one day and you’d probably want people around to be understanding.

*Thank you for reading as always*