Many (otherwise kind) people can miss the mark when interacting with people with disabilities. Through ignorance or a lack of consideration, it's easy to make someone feel "less than."
Laura McKee talks about the problematic language and behaviours she encounters regularly.
***
The power of the language we use
Ableism is discrimination against individuals with disabilities. It's based on the idea that they need "fixing" or are seen as "less than" people without disabilities. It can be deliberate or unintentional behaviour, often shown through language.
We perhaps forget that language has the power to manipulate, disarm, and reveal or hide our vulnerabilities.
You don't need to hurl insults at disabled people to be considered an ableist. In fact, you may even think you're being inclusive and kind. But your words can come across like wolves in sheep's clothing. Please step inside my world, so I can show you what I mean…
I've spent 30 years living with migraine. Although I was only diagnosed in 2009, the illness existed throughout my childhood and as a young adult.
Believe me, the language used by my school peers, doctors, and colleagues in reaction to my illness has greatly impacted my inner narrative.
My maiden name is Stilwell, which only added insult to injury. At school, I was taunted with the phrase, "are you still well, Miss Stilwell?'
My nickname was "Laura Stilunwell" for years.
The bullying felt worse because I was sick without knowing why. I was relieved to be diagnosed with atypical migraine 20 years later. But much damage was already done.
Then, in 2014, my world crashed when I became very sick with a rare brain condition. My negative self-talk was linked to my illness:
I told myself I was a burden to my family. I tried to convince myself that I was "faking" my illness and that it was all in my head.
Even though I couldn't walk unaided, I avoided mobility aids for as long as possible. Accepting that I needed help would be admitting defeat.
“Normal” is a loaded word
Many people living with a chronic or life-limiting condition have a similar story. So many of us spend years pushing through the pain and not "giving in." Because what's the alternative? Most things in our society are built for those without disabilities. So, using a mobility aid must be seen as a weakness and puts a spotlight on us for being "other.”
When you think about it, it's a ridiculous notion. The word "aid" gives it away. There are amazing inventions that help people with disabilities access the world. Mobility aids give us independence and freedom to do more. For some, these inventions are the only things that can get us out of bed daily.
When I finally "gave in" (as I then saw it), I no longer had a 30-minute crawl up my stairs in tears each night. I could go to hospital appointments without having to sit down every few paces. I had the luxury of going into my garden, free from worrying about falling over and getting stuck.
Seeing mobility aids as "quitting" is negative thinking. It brings shame and guilt when we should actually be celebrating. I realise now how many ableist barriers come with the word "normal."
Because if non-disabled folks are "normal," people with disabilities are not. Who wants to spend their life labelled as "abnormal"?
We must become more aware of the language we use and what impact it can have.
Things that make me go, "Eugh!"
Imagine living in a world where people label you with words that hurt.
Imagine having to know exactly where the toilet is before being able to go anywhere.
Imagine feeling the pressure to bite your tongue when the World's Sweetest Old Lady™ suddenly asks, "So, what's wrong with you?"
Imagine going for a walk with your family with every passer-by looking down at you in your wheelchair and smiling kindly.
This is our reality. You may think I'm being a bit dramatic, but if you pay attention, you'll see the following happen daily:
1. Using non-inclusive language
People sometimes try to use inclusive language by grasping at stereotypes. At best, this muddies their message. At worst, it outright mocks people with disabilities.
"It wasn’t intentional" isn’t an excuse anymore. Let's use our hundreds of communication channels to spread a message worthy of hearing. Society - get busy and teach people how to respect others!
2. The world is designed with accessibility as an afterthought
This isn't down to one person. But it's the 21st century, and we're still excluding those with mobility issues. New public spaces must include ramps, lifts, accessible toilets and monitored parking spaces.
As for public spaces and services, stop treating disabled people as a "once every so often" occurrence. Train your staff from the outset, preventing any scrambles when they need to find the wheelchair ramp. Make access happen rather than opt for "this will do; be happy about it."
No. I never want to use the men's loos again!
3. Asking "what's wrong" or "what happened" to us is nosiness, plain and simple
If I want to tell you, I'll do so without prompting. You may think you're striking up a conversation or being kind. In reality, you're asking for my personal medical information.
Please continue being kind. But don't do it if you want a "horror story" from us to please your curiosity or to share with others.
The World's Sweetest Old Lady™ was kind when she saw me struggling in the toilet of an old hotel. But does that mean I owed her my story?
4. Making a point to smile at us is less friendly than you think
The smiles I get when out with my family shouldn't be an issue. Right?
But would these smiley strangers be so friendly if I wasn't in a wheelchair pushed by my teenager? Hell no! They would walk straight past me.
But that wheelchair makes me stand out, so I get "the pity smile." By the way, I actually like standing out. But not for my disability and not because I need your approval.
The takeaway
The above four sins generally come from well-meaning people. They want to show that they care when the opportunity arises.
But while they may feel it's a "good deed well done," I get the shivers. It's like I've heard someone's fingernails rake over a chalkboard. If you want to be caring and inclusive, read more about ableism, and try to avoid it.
As a rule of thumb, it's not okay to single us out - even benevolently.
NPS-IE-NP-00658 January 2023