What it Means to be “Disabled”

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To continue our discussion on Intersectionality, we’d like to visit the “disability intersection.”

Last week, we shared via Facebook and Twitter a video poem called “On the Lam,” featuring a 25-year old girl riding on her mobility scooter. That woman is me! The poet is my mother, Bridgette Fowler. What’s unique about Bridgette’s vlog is that with each poem, she includes video poem to go along with it, as well as activities that can be used by parents with their children or teachers with their students. You can view the full vlog here: A Peek into Poetry. Below is the poem that inspired the video:

My mother and I thought of the idea behind this poem in response to several interactions with families who would pull their children aside and shush them as I rode by. We’ve seen so many missed learning opportunities for children and wanted to provide a resource to do so.

Hello I Am Disabled Name Tag Greeting Sticker Words 3d Illustration

Both my mother and I have a disability called Ehlers Danlos Syndrome (EDS). EDS is a connective tissue disorder in which connective tissue is “too stretchy.” This means we lack the structural support to hold our bones together and consequently have the propensity to partially or fully dislocate almost any bone in our body. EDS comes with a number of comorbidities, but most commonly comes as a trifecta with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). POTS is a form of orthostatic intolerance with primary symptoms being lightheadedness, fainting, an uncomfortable, rapid increase in heartbeat, and difficulty regulating temperature changes. MCAS causes individuals to have a hypersensitive/hyperreactive allergy system with symptoms such as hives, swelling, low blood pressure, difficulty breathing, or GI symptoms to many different “triggers”. All three are conditions that come in flares and can be quite debilitating. Most of the time these conditions are invisible from the outside which comes with its own set of challenges.

When I was a child, I was able-bodied (fit, strong, and healthy; not physically disabled). I was a dancer for 12 years and, for the most part, I was extremely healthy and very mobile. During my senior year of high school, I began showing more severe symptoms of EDS. I was dislocating my knee caps, rotating vertebrae, and partially dislocating my ribs. I was told I needed to quit dance and begin carrying a rolling backpack. I remember being bullied for carrying it… from little things like my teacher announcing my arrival to class each day with, “Flight 405 now boarding,” to the constant joking about my rolling backpack by my “friends,” to having a girl behind kick my backpack and laugh at me with her friends. Such a small change, with such a huge price.

Seven years later and I’m primarily using a mobility scooter and partially and/or fully dislocate almost every bone in my body (except my teeth!). However, aside from my scooter and braces, I look able-bodied. This is an important reminder that not all disabilities are visible. I have an interesting perspective having gone from able-bodied to “invisibly” disabled.

Some of the things I have learned since becoming disabled:

  • Inaccessibility is more common then you would think. When I was able-bodied I always thought sidewalks were required to have slopes for wheelchair users. Now I realize an entire city is only as accessible as it’s sidewalks.
    • In Washington, D.C. a resource for walkability scores is available to determine if your path is accessible. The most common issue are sidewalks blocked by construction or trashcans, with over 12,000 of them blocking sidewalks. A sidewalk with no curb ramp comes in at 8,670. Lastly, there are 5,740 surface problems (e.g. broken concrete).
    • In Richmond, VA, my hometown, many of the sidewalks are cobblestone or uneven bricks with an extreme lack of curb ramps. Even if you find an accessible sidewalk (such as Cary St.) most stores have a step (or more) up into the store.
  • People treat you differently when you’re disabled. This has been the most interesting perspective I’ve gained. People who would otherwise ignore me walking, stare insensitively when you’re in a scooter. Other’s whisper to their friends or children, some give you a pity smile. Some people look you up and down as if they are trying to figure out what is wrong with you, especially if your disability is invisible like mine. I have and know others who have been berated after legally parking in a handicap spot for not looking disabled (e.g. walking from car to the store without mobility aids). Last week, I was walking my dog on my scooter and an older gentleman yelled, “Mush!” at me.
  • People don’t help as often as you’d think. I couldn’t count the number of times I have tried to get into a door using my scooter that doesn’t have handicap access while an able-bodied individual stood watching without offering help. As someone who would always help someone with a disability prior to becoming disabled myself, I am still baffled by this. I will say I have met incredibly nice and helpful individuals but nowhere near as many as I would have imagined.
  • Children don’t understand and look to their parents for an explanation. This is why my Mom and I, as well as Worldwide Speech, want to help parents and educators normalize and teach children about different disabilities.

Tips for teaching children about those with disabilities:

  • Have a conversation with your children early. It is never too early to have these conversations.
  • On the Lam. Use the vlog mentioned above and accompanying activities to begin the discussion about those with physical disabilities.
  • Real-life examples are so important. Children learn by watching adult behaviors. Imagine this situation. You are on a walk with your two children. You see a person using a mobility aid such as a wheelchair or mobility scooter coming towards you. What would you do? Some may quickly grab their kids and pull them aside to allow the individual to pass. As they pass by, some may look down and avoid eye-contact. Others may stare them directly in the eyes with a confused look. Some may hush their children but others might encourage them to smile and wave. Some may whisper hastily “Don’t stare!” I don’t speak for all individuals with disabilities, but, personally, I appreciate a smile and wave or nod. By choosing this response, you open up an incredible teaching moment. Okay, so you modeled a smile and wave, what next?
  • Talk about it! Ask your child if they have ever seen a scooter or wheelchair. Talk about why certain people have to use them and stress that they are just like everyone else with a different way to move around. It is also important to mention not everyone who uses a wheelchair or mobility scooter has to use it 24/7. A lot of individuals, such as myself, use them for longer distances but are still able to move around the house.
    • Unsure of PC terminology? Err on the side of caution and use “person-first” language. This means instead of labeling someone as “disabled,” you’d say, “a person with a disability.” I personally don’t mind being labeled “disabled,” because I feel like my disability and I are not separate. However, the idea behind person-first language is not to define someone by their disability. If you are wondering which term to use with someone you know, ask! Differences in opinion regarding person-first language exist within our community.
  • Encourage Questions: Curiosity is natural. Encourage your child to ask questions. If you don’t know an answer, be honest, do some research, and get back to them. In addition, I don’t speak for all individuals, but if a child had a question about my scooter, I would happily answer.

Additional resources

Wheelchair Person Symbol in Shape of Heart, “Not all Disabilities are Visible”

”Don’t assume who is or isn’t disabled. Though the most widely recognized symbol of disability is the wheelchair icon, disability comes in many forms. Neuroatypicality, cognitive disabilities, mental illnesses, chronic pain and many other disabilities are not readily visibly apparent.


Final thoughts…

While advocacy for many disabilities has improved, we have so much farther to go until we reach equity. ADA had it’s 30th anniversary recently and it is still fully legal to pay individuals with disabilities below minimum wage.

Some food for thought, individuals with disabilities have fought for ages to get accessible accommodations for work, school, and medical care and were told working from home, attending school remotely, and telecom appointments were impossible. But when COVID-19 hit, able-bodied people everywhere were given these opportunities without a fight. Why are we forced to fight for the same opportunities pre- and post- COVID-19?

It is a long road ahead of us, but the more informed our children are, the better chance we have at raising an open-minded, empathetic, compassionate, and inclusive generation who will continue the fight for equity.

Wheelchair Disabled Person Symbol Disability Freedom Ability Empowerment 3D Illustration