Why I Need to Be 'That Mom' for My Daughter With a Disability


A random post on Facebook jolted me out of my apathy. A friend had posted about her struggles to assist her adult disabled son with trying a pair of pants on in a dressing room. There were no “Family Dressing Room” facilities in this store. She felt unsure of which dressing room to take him into. “Men or Women?” As we chatted about it online, I realized there really aren’t any accommodations for opposite sex parents/caregivers to assist loved ones with trying on clothes in retail stores. But the even bigger elephant in the room (or lack thereof) is that the accessible public restroom issue is still a huge public health concern for people with disabilities and their loved ones.

How did I stop ignoring this issue? I continually read about many of my friends’ struggles. When did I become so desensitized that I stopped grumbling, griping, and advocating for proper disabled restrooms? Am I losing my power to be pissed off about it? No pun intended.

I need help here. Don’t let me go down without a fight. I need to get my groove back. I need to be That Mom everyone loves to hate. That mom who, when the school, doctor’s office, and neighbors see her coming, they think “Oh no, not her again!” I am proud to be That Mom! I have friends who are pretty damn good at being That Mom too.

Little by little, I have stopped expecting that the world will provide basic accessibility for my daughter. I now shop online with Ari, or bring home clothing for her to try on and then end up returning the 10 items that don’t fit. I wait outside dirty accessible bathroom stalls with Ari while an able-bodied person is using it. My husband had to take Ari into a dirty men’s room at the hospital where I was having a biopsy done. It was the first time for him. He was mortified that he subjected his daughter to a dirty men’s room, in a hospital, no less.

Why have we raised the bar so low for accessibility? Why do we accept that “less is more?” Is it because we believe that any small gesture towards accommodation means something? We grasp it like it is a golden ticket and we just won a raffle prize. I think we get tired of fighting daily battles for inclusion and accessibility. I think we get sidetracked with all the other demands of raising a child in this world. I think we juggle medical appointments, insurance companies, education, family, work and social commitments. And then we wake up and start the day all over again. Some days we try so hard, we forget about the meaning of basic rights and accessibility.

So That Mom, I want you back! I need you back.

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