creative center.

Perfectly Imperfect

Eve Simon 04/05/2019

Be Yourself

You’ll suck at anything else

– Brené Brown

Disabled. Handicapped. Mobility-challenged. Limited. This is how I’ve described myself.

Strong. Brave. Inspirational. Survivor. This is how I’ve been described.

All these labels are right. And all of these labels are wrong.

I used to take mobility for granted before I was diagnosed with Multiple Sclerosis — it wasn’t something I really understood. I’d see someone with a physical disability and not know the right thing to do or say. Should I offer help if they don’t ask for it? Should I tell them how sorry I am for what they have to face? Would it be ok to meet their eyes, all the while wondering what happened to them?

Now that I’m living with a progressive disease like MS, I realize that labels matter a great deal. They can be well-meaning as well as unintentionally hurtful. They can lift you up one minute and destroy your sense of self the next. They can simultaneously define a narrow place in the world for you while you smash every stereotype to bits.

The one thing labels cannot do is tell you who you are. That is, unless you let them.

Here’s the truth: if you’re disabled in any way, you will both stand out and be invisible at the same time. Be seen as different, helpless or the target of pity. When you say “You’re so inspirational”, we might ask ourselves “Is there an alternative?” even though we know you mean well. It’s a constant tug of war between words, actions and context.

Disability is not binary. It’s a process, a range of feelings both emotional and physical, that can vary by day, by year or even by hour. Living in this new “after”, I understand the empathetic — not sympathetic — struggle that able-bodied folks have with people like me, yet I am still extremely frustrated by it. And I am often just as guilty of misunderstanding it.

At my yearly checkup last month, I was happily relieved when my neurologist said I was doing great after being diagnosed with Relapsing Remitting MS (the “good kind”) 10 years ago. Then she added “But you’ve likely got a touch of secondary progressive MS.” (the “not so good” kind).

Wait, what?

My head (and body) knew that she was right, and had known for a while. That things had changed and I just needed time to adjust to this “new normal” as I have every other step of the way.

But my heart was devastated. I burst into tears when I got home — so no one could see me — and began to mourn the loss of the life I thought I had just 30 minutes before. But why? I was the same person. It was just a new label. How could it matter so much?

Shortly after seeing my neurologist, I attended South by Southwest in Austin, Texas. This 2-week innovation & creativity festival is spread across multiple locations, brings nearly 100,000 people and 350 Million dollars into the city, and is intense, mind-expanding and exhausting.

Now imagine being part of it if you are anything less than able-bodied.

I’ve rented a mobility scooter to get around SXSW for years because the distances are too great to use my cane, but to be honest I always felt awkward. Thought people were judging me, wondering why I wasn’t walking around like everyone else. I’d be the only one rolling through the streets from one venue to another, the only one making event decisions based on what I could manage with my limitations. Desperately wanting to appear normal, I’d try to make people feel comfortable around me, using humor to defuse awkwardness, or pretending I was not that disabled or that different. Other people have it so much worse, I thought. I’m not part of that story.

Processing what the doctor said, I arrived in Austin struggling more than usual. My act wouldn’t cut it anymore and I was scared. I was officially disabled.

Then something changed.

I noticed more disabled attendees than ever before, in scooters and power chairs, using canes and walkers and crutches. There was a whole accessibility content track, with disability activists headlining and tons of sessions about inclusive design. And best of all, I was offered a (subtle) accessible designation on my badge that allowed me to scoot into any session I wanted, usually sitting in ADA-reserved front row seats. Game changer.

But then all my labels were visible.

There was no hiding my scooter, and I felt more vulnerable than ever before. I had two choices: Embrace the amazing gift of accessibility and live this event to the fullest (labels be damned) or be afraid of what I cannot control and the blanks of my story that others would fill in for me.

So I owned my right to be present. Stopped apologizing for taking up more space on the sidewalk. Actually wanted to be seen by the fast moving crowds who didn’t expect me to be there. And didn’t settle for less.

At one of the sessions, I sat next to a woman in a wheelchair who was born without legs. When she talked about not having a “before” in terms of being handicapped, it struck me how different disability is for everyone. A struggle that is new to me was just … life.. for her and I have never seen a more joyful, powerful, engaged human in my life.

She was real.

We have to change the conversation about disability by embracing — and understanding — all our labels, and the power they have over us. We need to teach each other the truth about walking (or scooting) in different shoes. That it’s ok if someone calls your story of survival “brave”. That it shouldn’t take personal trauma to recognize that everyone is different, and special and worthy. That we belong.

I am handicapped.
I am strong.
I am disabled.
I am brave.
I am limited.
I am a survivor.
I will always be grateful.
I will always be authentic to who I am
I will always be different, but just as human as you are.

And I am no longer afraid to be seen.




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