A woman on a mobility scooter, her husband on a bike, and their caregiver in a transport vehicle roll into a parking lot of the Grand Canyon when a stranger approaches them and says, “I’m disabled, but you’re more disabled than I am. Good for you for seeing the park.” (No joke.)
The woman on the mobility scooter, her husband, and their caregiver are speechless. Although the comment was well-intended, the interloper missed the mark – completely.
The woman on the mobility scooter (that’s me) didn’t know whether to laugh or cry; the husband biked away disgusted; and the caregiver brokered the ensuing silence with an eventual half smile, and mumbled, “Gee, thanks.”
Later in private, the traveling trio commented on the sticky encounter. The person had inadvertently and rather thoughtlessly made a contest out of being disabled, an example of how good intentions can be muddied by poor content.
Unfortunately, this situation happens in various ways to those of us who are differently abled on a daily basis. Although most people we meet are helpful and super lovely, on the whole, greater mindfulness on behalf of the world at large is needed to normalize being differently abled.
Here are some suggestions:
We live in a society waking up to the importance of language. A lot of controversy revolves around whether it’s best to use the word “disabled” or “differently abled” instead of the word “handicapped”. As someone who could be described using either term – “disabled” or “differently abled” – even I’m on a learning curve. Personally, I prefer “differently abled”, but I am okay with either term as long as the speaker focuses more on what I can do and my personhood. Don’t let fear of making a mistake between these two words stop you from connecting to others.
Unless anyone with whom you are speaking is a two-year-old or a puppy, please use an adult tone of voice and vocabulary. Avoid infantilizing your conversation or mannerisms. Just because someone is using a wheelchair, scooter, or is non verbal, doesn’t mean they are mentally incapable of understanding adult conversation.
A Friendly Hello
No one likes to be stared at. There’s nothing more normalizing than offering a friendly hello to someone whom you believe is disabled. Even a smile will do.
If someone doesn’t respond to your greeting, remember that some conditions may make it difficult for some people to smile or talk (like FSHD). They will appreciate your friendliness nonetheless.
Position Front and Center
When speaking with someone who is being pushed in a wheelchair, be sure to stand and speak where you can be seen and heard. If someone with a disability is rubbernecking in their wheelchair, it makes conversation difficult. The same holds true if you are pushing someone in a wheelchair; be sure your client or loved one feels visually included in the conversation by turning them towards the speaker.
Be Politely Informed Rather Than Ignorant
If someone has a leg cast on, it’s generally acceptable to ask, “How’d you break your leg?” The same holds true with someone with a disability. Once you have initiated conversation, it’s okay to politely ask about the person’s condition out of a sense of being informed. Just use language that supports educating yourself rather than pitying the person. Some suggested language:
- May I ask you about your condition?
- Do you mind telling me about your condition?
- How long have you been suffering with your condition?
- How long have you had (assumptive disease)?
Don’t be insulted if someone doesn’t want to discuss the details of his or her disability. Although I for one am happy to grow public awareness of my condition (FSHD), someone else may not have the energy or inclination to answer your questions at that time.
When speaking to someone with a disability coupled with a caregiver, talk directly to him or her, rather than just the caregiver. Avoid referring to the person with a disability in the third person. Too frequently my caregivers have had to tell someone asking questions about me with me present, “You can ask her yourself. She’s right here, and understands perfectly.”
Honor parking signs designated to assist people with disabilities in getting around more easily. (It’s the law.) Even if you think you’ll only be parked in a signed zone for a short time, that could be exactly when the space is needed for someone with an appropriate ADA parking placard or license plate.
Be aware of disability ramps positioned in sidewalks, and park off sidewalks (you’d be surprised!).
Also, idle your car well before the start of crosswalks. I cannot tell you the number of times motorists (on their cell phones) block a crosswalk as I’m trying to scooter through.
Be Aware of Your Surroundings
Navigating a mobility device can be challenging, especially in public spaces. When out and about, give clearance to people using wheelchairs, canes, walkers, scooters, or simply having difficulty walking.
If you see anyone – with or without a disability – struggling to open a door, you can always ask, “May I help you with the door?”
If the facility entrance does not provide an ADA automatic door opener, you can always inform management of its necessity.
It took me a year to install a pool mobility lift at my townhouse complex – at my own expense (read more). The legal and financial challenges I faced should of been unnecessary. But laws surrounding accessibility still require the votes and voices to make going swimming, to the movies, or to any other shared venue fully accessible to everyone. Speak up and vote in favor of providing accessibility equipment and other infrastructure changes to normalize living life with a disability.
Engage with Inclusivity
Some of today’s best television, movies, and theatre highlight the talents and lives of people with disabilities. Spending time watching such shows helps to educate and normalize living differently abled.
Here’s a list of binge-worthy shows and literature that support inclusivity:
- Movie: The Peanut Butter Falcon
- Movie: Don’t Worry, He Won’t Get Far On Foot
- Movie: The Fundamentals of Caregiving
- Movie: The Upside
- Movie: Still Alice
- Movie: The Father
- Movie: The Intouchables
- Documentary: Crip Camp
- TV Series: Atypical
- TV Series: Special
- TV Series: Breaking Bad
- TV Series: The Good Doctor
- Book: Angle of Repose
- Article: How a Musical is Changing Perceptions About Disabilities, Including Mine
Your Dollars Make A Difference
More times than not, living with a disability is downright expensive. Caregiving costs, specialized equipment, and medical expenses add up quickly. Then there’s the need to develop cures and to fight legal battles for basic disability rights. Your dollars make a positive difference when you contribute to fundraising organizations and individuals in need.
Many thanks to Maya Holmberg for her collaborative input on this article.