We are on a flight to LA. I cannot concentrate on the important UNICEF speech that I should be writing on the Global Refugee Crisis to be presented on Monday at the Annenburg Space for Photography, a really big deal.
But my mind is racing and my heart hurts after being totally stumped by two TSA agents insisting on giving me a security screening known as a ‘pat down’in a private room, usually done in the wheelchair in the open. With the door closed to the tiny room, I struggled to stand as they asked me a question that I wonder is even legal to ask, “Were you born like this?”.
Obviously they were referring to my weakened body that I needed to lean on the wall, as well as my walker, in order to stand. While I invite inquiries about my condition to raise awareness about disabilities and break down stigma, their tone was not one that made me feel empowered in the moment.
I quietly explained that while I was born with a genetic defect the “impairment” did not manifest itself until adulthood, that I was only diagnosed at age 30.
Their response, which probably came from their version of empathy, was instead just a worse kick in the gut: “Well that’s just awful. You sure are lucky your husband married you this way. What a blessing he is.”
As they proceeded with the pat down, I was just dazed. My outspoken self had no idea how to respond, partly because I was confused about how I was feeling and shocked they could be so rude.
John was waiting patiently, already annoyed with them for taking me in, so it did not help when they both praised him to high heaven for marrying me, “We heard your story”, they said to him, “You really are a blessing to her.”
My husband could see the discomfort in my eyes, and my desire to just get out of there, so he did not entertain their comments with a response about himself, rather a sweet word about me, as he always does.
Sitting on the plane, the struggle inside me to make sense of what had happened, began to infuriate me, probably because I did not have my thoughts in place to respond earlier to the TSA agents.
I am not any less of a woman, wife, companion or partner because I live with a disability.
I am not a victim because I live with a progressive muscle wasting disease.
Yes, I am vulnerable and because of it, more courageous.
Yes, I have difference abilities, which makes me absolutely unique.
Yes I sometimes need help but that means more moments to cuddle close together and reasons to say ‘thank you’.
My husband does not love me DESPITE my disability. On the contrary, he loves me because of how I face this daily struggle with dignity.
Yes my husband is a blessing but not because he ‘married me like this anyway’.
Are expectations of humanity so low that someone who marries a man or a woman with an impairment is automatically a saint?
Are standards for being “marriage material” that vain and empty?
Why does society still think so little of what people with disabilities have to offer to a marriage, a job or society?
If you or anyone you know has any of these small minded, ignorant and archaic ideas, please do me a favor….
See around you all the valuable contributions that people of all abilities make every day to their relationships, families and communities.
Educate yourself on the issues facing people with disabilities to help shatter stigma and discrimination.
Rise Up! Support people and causes advocating for inclusion and equality. Walk the talk, even if it might be a sexy strut or wobble like mine.