One girl’s journey through conscious living.
By Tiffany A. Potter
I began my column over a year and a half ago with a promise to myself that I would not hold back or shy away from being as transparent with my truths as possible, all for your benefit hopefully. If you have met me back here in this space every month then you have learned quite a lot about me; particularly what I’m going to talk about this month. But if you’re new to my column you should know this before we proceed any further…I was born with a rare form of Muscular Dystrophy of my hands and arms. For the first few months of life, I had no ability to move them by my own strength and the prospect of having any use of them was hopeful at best. I am now as functioning as I can possibly be yet still live with the limitations that plague me, but seemingly “normal” to the outside observer with the exception of crooked arms that are nearly undetectable if I am wearing long sleeves.
My disability is always with me, not only literally, but figuratively and emotionally as well. My challenges from the moment I took my first breath have colored everything that I have ever done. It has driven my career choices, my romantic choices, and even my outfit choices (I can’t reach zippers and buttons, and I can’t wear regular bras which resulted in being teased relentlessly by classmates in Middle School when wearing a racer-back style that could be seen through the back of the white shirt I was wearing one day). It has driven me to work harder, aim higher, run faster, dig deeper, learn more, and grow a thick skin all in an effort to prove to the world that despite my perceived shortcomings that I deserve to be here, I deserve to be a valued and valuable member of our society. It has been an exhausting adventure full of perils and pain but I don’t wear my journey on my sleeve…most of the time.
Cut to a few weeks ago when I was traveling on a work trip and met a new colleague of mine. Let me state this now, I absolutely adore all of what I know of this person from the short few days we worked together. She is just lovely, so much so that I find myself disappointed that we don’t live closer so that we could spend more time together; which is to say that her remark which is the catalyst for this month’s column does not come from someone that I deplore who is unkind and insensitive. Just the opposite, really, and I hold no ill feelings toward her for what she said in a casual conversation we were having. But I do believe that what she said to me is something that certainly a thousand people have thought about me in my lifetime, and what I feel we are all capable of expressing because it’s a pathology of our society.
As we were chatting and she asked me about life with my disability her next comment was “…which is hardly a disability.”
Now, Lord knows that I have put my foot in my mouth more times than I could ever count; I’ve hurt people’s feelings by saying something awkward, or by something being lost in translation. At times, I have spoken before thinking, I have failed to take the listener’s feelings into consideration (I’m trying to work on that), I have not responded with compassion, and sometimes I have said things I didn’t even know I was capable of saying…I have just blurted out something and then beat myself up about it later. So I want to be sensitive to this person and the intent behind what she was saying. Perhaps I am so high functioning that I don’t seem to let it bring me down. Perhaps I carry myself so well that she hardly notices that I live with a challenge. Perhaps a million things, or…perhaps…I hardly have a disability.
But her remark put voice to something I have been acutely aware of my entire life which is, we as a society tend to “rank” disabilities based on our perceptions and expectations. Whether you’re fully aware of it or not I’m here to tell you that we do. And we shouldn’t. We so, absolutely, should not.
“Disability” is a spectrum, a single line that represents the severe challenges at one end and not so severe (but no less important) on the other end. There is no separate metric for those that live in a mobility device or those that are sight impaired versus those that live with Post Traumatic Stress Disorder or on the Autism spectrum. There is no hierarchy of disabilities where some warrant more sympathy and understanding as opposed to others that do not because they don’t “seem that bad”. Those of us who live on this single horizontal (not vertical) line is never “less than” another; regardless of where we fall on it when considering the health and lifestyle ramifications of the disability. Every single one of our struggles, whether physical in nature or unseen, are all valid. A challenge is a challenge is a challenge.
Of course, I don’t blame people; I understand where it comes from. Just watch both the Democratic National Convention and the Republican National Convention this year. Both featured individuals that live with a challenge or two (which is wonderful as we definitely need to be a part of the conversation), one who is sight impaired and wearing her glasses while also living with Cerebral Palsy, and the other in a mobility device. Both of which were also on that stage to prove just how sympathetic, kind, compassionate, and sensitive these two candidates are…and the more severe and obvious the disabilities showcased the more likely it is that you will believe the underlying message. We’re conditioned to “rank” people. It’s human nature, I suppose. But I can’t help but ask does it have to be? And if we continue to rank people on “most disabled” who wins? And if they “win”, what do they win? If we don’t challenge this idea I fear we will continue to do it over and over again, to the detriment of those of us who feel it’s just one more example of being different and separate when all we really want to do is be valued for who were are on the inside. Every one of us, regardless of our challenge(s), are equally worthy of kindness and compassion, understanding, and recognition that our struggles are valid and legitimate.
No, I am not “hardly disabled”. My disability has been reason enough to be made fun of ceaselessly, it has been reason enough for men to not wish to date me. I have been screamed at from an open car window “YOU DON’T LOOK HANDICAPPED!” as I was getting out of my car that was parked in an accessible parking space with my DMV certified placard in the window, and I have had nasty notes left on my car by people with the same sentiment. I can’t forget those experiences no matter how hard I try. They have left indelible imprints on my soul and my character that have altered who I am and who I could have become.
So when someone sees me and places me firmly in the “hardly disabled” category of individuals you diminish and dismiss all that I am and all that I have done to get here. And while the majority of us don’t wish to dwell in the space that our disability holds in our lives, recognition of the journey whether spoken aloud or through the energy you put out would be greatly appreciated. Don’t compare me or anyone else to the people you may know or have seen (perhaps on a national stage) and don’t minimize my journey because I don’t seem “disabled enough” to you.
Tiffany is a disability consultant, entrepreneur, inspirational speaker, and change agent. Find her at: www.TiffanysTake.com Instagram: @Tiffanys_Take.columnist