My primary disability is like the signature piece to an ensemble that I will never be able to take off. It is the first thing people see when they meet me, one of the only things most remember about me and the thing I must always know how to ‘wear’ well.
Where most people have style coaches to show them how to mix and match prints and colors, there is no guide that shows me how to accessorize my disability. No one to show me how to pair my SMA with my Celiac. Or how not to clash these Migraines with the SMA. There is no book for that.
So it is with this dilemma in mind that I choose what I wear, do and Am. My clothing is a deliberate choice in accommodating what my body can’t or is no longer able to do. Straight leg pants to give the illusion of symmetry from thigh to ankle, bright sophisticated tops to brighten my face (thus making me more inviting) and to draw attention away from my slightly curved spine. Fun, age appropriate beanies to hide the ravages of Celiac on my hair, a great attitude to smooth over anything else. It is all for something.
I was pre-occupied as I was being dressed this morning and picked two articles of clothing that did not go together. When I noticed my error, I advised my aide of the wardrobe change to which she responded, “You can wear it, no one will notice.”
There are many things I will and have done in this life: travel, raise children, work hard, eat too much, not cry enough. But deliberately mismatching my clothes and going out in public, is not one of them. Faux pas’s happen, but not pulling myself together because of laziness? No.
I advised her that she had a choice: change my pants or my shirt but one of them would have to be changed. Mind you, this was during the phase of my dressing where changing either thing was not a big deal. Two seconds and either could have been easily swapped out. And I don’t want angry messages in the comments about how terrible a person she is – because what I told her next, will probably cure her of that when dealing with me.
I advised her:
I will not be both disabled and not dressed right. Or disabled and roll out the door like no one cared what I looked like. Or disabled and not be put together. Maybe for you that will work but as long as I have breath, that will not be something that I deliberately do.
And it doesn’t matter if not a single soul was out in the street and no one saw me, that fact that you knew and that you let me go out there looking like that, says a lot more about you and how you feel about disabled people than anything. Me leaving to go outside dressed crazy, should matter to you because it is a reflection of the care you give to me.
She looked at me with wide eyes, surprised and ashamed at what I said or that maybe I had to say it at all. And I just looked at her as she averted her eyes and changed my shirt into something appropriate to go with my pants.
I treat everyday as ‘show time’ because having such a visible (and invisible) disability doesn’t afford me dress rehearsals. I won’t make any apologies for my style or how I do things – those are not my burdens to bare.
But what I won’t do, is allow what other people think of me or how I should be, to dictate how I navigate through this world. I get one good #alphet and I will accessorize the hell out of it, whether you like it or not.