For the non-disabled, this may be a new concept. Within some specific disability groups, there are hierarchy systems, which not all people like to acknowledge or talk about. Due to my role in the past as a support group facilitator and my attendance at conferences, people whisper to me their question. I barely stutter, do I still belong? My disability is “mild” …can I attend?
I’ll be using my lens of stuttering to explain this.
There are people who stutter, who stutter on every word, or every second word and they can take many seconds to say one word. They stutter A LOT. The few people I have met, can take 30 seconds to say one word.
Then there are some people who sound completely fluent. You don’t even hear any stuttering, or sometimes you’ll hear pausing or what sounds like hesitating.
Then there is everyone on a sliding scale in between.
From the outside it is easier to assume the person who sounds like they barely stutter are the ones who have it easier in life and are barely impacted.
Here is the truth.
2 true stories as examples.
This person is completely fluent the whole time he is telling his story and it was a long one. Summary: he makes a six-figure salary, has been married for 25 years, has 3 children and has planned or tried to commit suicide over 33 times specifically because of his stuttering.
A woman, who barely stutters, tells me she never wants to marry and never wants to have children because she could never risk having a child who stutters. Life is hell. Her mother who also stutters, but who you would never know. Told her that she must never tell anyone she stutters. You must hide it at all cost.
These people live their lives as “covert stutterers”. They will change names to avoid stuttering, switch words constantly, and live in absolutely fear of being found out. Being discovered.
After 3 years in speech therapy in high school my stuttering was controllable enough that I became a covert stutterer and I told everyone that the speech therapy worked and that I was cured. I didn’t stutter anymore. Life was exhausting and filled with anxiety and fear every minute of the day.
I am someone where my stuttering varies. I can have some days or be in some situations where I am very fluent. Other days, my speech struggles. I never know what my speech is going to be like when I wake up in the morning. That unpredictability is hard.
When I am talking and my words are fluent there are two reasons. One – I am just talking and my words just happen to be fluent. Two- I am working really hard in my head and my body to produce fluent words and you have no idea how much work I am doing right now.
Because I can be fluent for a good chunk of the conversation and then just suddenly have a significant stutter and block on my words, the general public are very confused by this. Because of this, I get BIG reactions from people. If I had a dollar for every negative reaction in regards to my stuttering, I would be rinsing out my shampoo every morning with white wine.
The iceberg analogy is used a lot in the stuttering community. What you see, is just a fraction of the impacts and the amount of energy we put into overcoming barriers and managing our speech.
People who are more impacted by their disability are accepted very easily into the disability community. And you would be surprised how different disability communities have their social groups, and who the cool kids are. 😉 They don’t question if they are deaf enough, or autistic enough or do I stutter enough? Do I belong? It’s my perspective that the closer you are to the “typical” line, there is a whole set of different struggles that come with that. I can sometimes pass as someone who isn’t disabled, when at the dentist or having a short conversation with a cashier. Have a taste of what “typical” feels like and then be bouncing back moments later to being viewed by others as very disabled. Growing up it was a struggle with identity that I have had to manage.
If someone identifies themselves as disabled, believe them. They may look like or sound like or appear “typical” to you. You have no idea how hard they are working to appear that way to you and what they are struggle with. Invisible disabilities are called invisible for a reason. Questioning someone and doubting their experience on whether YOU think they are disabled enough to identify as disabled, is ablest. Believe them the first time. They know what they are talking about, and I would bet it was a journey for them to reach that point, to say those words.