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What Being Raised by a Mother With a Disability Taught Me

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I am constantly overcoming my obstacles, or at least try to at every turn. When I would go to my family’s or friends’ houses and they forgot to let me know they had a couple of steps, I’d crawl up them like a dog on all fours. I lived in the Bay Area and when I got to the 16th and Mission Bart station, I quickly learned the elevator was broken, even though I checked the site and called the Bart info line. The only alternative was to take it to 24th and Mission and push myself to 16th St. I realized going down the stairs was an easier option for me.

I saw a young Indian couple and asked them to help me. I instructed them how to fold my wheelchair, grab the cushion, and carry it down the stairs. I told them to meet me at the bottom of the stairwell and I would tell them what to do when I got there. I pushed myself down on my butt and when I got to the bottom I instructed the young couple on how to open the wheelchair and put the cushion back in place. I transferred myself into the chair and went where I needed to go.

When I became disabled people, were and still are always so in awe about how “resilient” or “inspiring” I was. Here is the thing most people do not know about me: I grew up with a person who was truly resilient, inspiring, and I never really knew it. My mother. I’m not sure when she got diagnosed with having rheumatoid arthritis because it was 1968 and I was just born when it happened. As I and later my brother grew up with her we didn’t really know we were different than anyone else.

We did hear her complaints about the clothes we chose made us look like beggars, not showering enough, or how our grades were just not good enough, but the only time we heard about arthritis was as an explanation for the pain she was in. She still cooked, did housework, and was like any other person’s mother we knew. As her arthritis worsened and lessened her ability, my father assisted her and we got a variety of housekeepers to keep up with the housework.

Despite her pain, my mother continued to do as much as she could around the house. She also traveled to most parts of the world, every year recognizing her position as an elder in her Indian community. She would host amazing parties for them, and when I’d come home for visits she always made the coconut shrimp curry I loved. She never really stopped until the day she died. It was through her that I learned about independence. My mother set an example for me of how to be an independent person living with a disability. We just never knew that’s what she was doing.

Originally published: June 4, 2020
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