How Disability in My Family Has Enriched My Life


For a long time disability was a thing that existed out there — in a place I was aware of, and that I worked with, but wasn’t a part of my day to day life like it is now. It didn’t affect my consciousness, it didn’t change how I thought about the world and it didn’t make me think about the subtle attitudes surrounding disability that are woven into our language, our thoughts and the structure of our society.

Disability was something that was OK when other parents had to deal with it, but it was not for me, thank you very much. It wasn’t something I wanted as part of my life.
Then my daughter, Phoenix, was born, all 6 pounds, 5 ounces of her, ready to meet her parents at 36 weeks and carrying with her, in every beautiful cell, an extra copy of her 21st chromosome.

That moment when your heart breaks, when you realize your child is going to be seen by society as less than as other and as unwanted. I wanted her, there was no doubt about that; it was just the disability that caused me so much distress. The cognitive disability especially.

I’ve come to learn that this perception of disability as a negative thing is an attitude called ableism, although I prefer the term disability bias. It’s a social belief that disability is bad, wrong, other. That it is an unacceptable or unnatural way of being in the world.
It’s looking at others through your own eyes and judging their lives to hold less value because it differs so greatly from our own. The truth is that we can never project our own experiences to determine the worth or value of another person’s life. It doesn’t work that way.

All lives hold value. All people suffer. Everyone struggles. It’s not for me to say that my daughter will find less satisfaction with her life or will struggle more because she has a disability. All she will ever know is the life she has been given — that of a child of a teacher and a stay-at-home father, a sister to identical twins, a person with alopecia, a friend, a neighbor, a good reader and someone who learns, loves and expresses herself in her own unique way. When I finally understood these truths is when I truly understood disability bias.

I have the good fortune of living in a multigenerational house. My mother lives with us and is a daily part of our lives. Although it was decided that my mother would live with us because of age and disability, the notion of burden never crossed my mind. Ever. Only how delightful it would be to have her as part of our household. However, other people’s comments about her living with us are fascinating.

“Oh, that must be hard.”

No, it’s not. It’s lovely to have my mother with us. She’s an amazing lady, and the relationship she has with her grandkids is beautiful to watch.

“That’s too bad.”

On the contrary, it’s not bad at all. It’s wonderful. I have another adult in my house who can empathize with how challenging it is to raise twins (having raised twins herself), who I can share about my day with and whose perspective and input I value immensely.

It’s similar to how I feel about the possibility of Phoenix living with us as an adult. I love Phoenix. She’s a delightful child with whom I have a special bond. If she lives with me into her adult years, then great. If my twins live with me into their own adult years, that’s OK too. This is my family. The family I was so happy to build and am so grateful to have. I hope to be surrounded by family to the end of my days. It’s one of the greatest wishes of my heart.

It’s been a year now and I continue to value her presence in our house. What a gift for my children to have daily access to such a treasured family member who dotes on them as only a grandma can. What a gift for me to have my mother in my home providing company and companionship to us all.

Both Phoenix and my mother provide the context from which I have been invited into the world of disability. There are three or four Down syndrome families that I have forged close bonds with. These families have gifted me differing perspectives and understandings of how disability has enriched their lives as well as provided a circle of support for challenges that confront our children.

I have also had the good fortune to “meet” many wise and educated parents and members of the disability community who further my own growing knowledge about the field of disability. Things like the medical model versus the social model of disability. Or how important my use of language is. Or how using terms related to disability such as “lame,” “crazy” and “stupid” serve to perpetuate the attitude that disabilities are synonymous with negative attributes.

Disability surrounds me. It comforts me. It’s given me tremendous purpose, has helped shaped my writing and is prompting me to continue my formal education in the future. It’s a part of my life I am incredibly grateful for.

Johanna's three daughters putting together a gingerbread house
Johanna’s three daughters putting together a gingerbread house

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