Becoming Disability Proud

"Fight for disability rights and disability pride so expecting parents won't be afraid after a diagnosis..."

These words by an anonymous woman born with a genetic condition have stayed with me since I read her essay Where Love Ends. It struck me that she would list disability pride as one way to prevent abortions. In her essay, she points to the fact that in the United States parents abort two-thirds of fetuses diagnosed with Down Syndrome. She also talks about her experience with a doctor who asked if she was planning to have children, and who informed her that nowadays there were treatments for ensuring that children did not have her condition. "I naively asked what the treatment was," she says. "It was early detection of the genetic mutation in fetuses, and abortion. Of course, I should have known." 

I tried to put myself in her shoes. What would it be like to be told that they can prevent people like you from being born? There might be some disabled people who would prefer not to have any children, or who would rather terminate their pregnancies to spare their babies any of the sufferings they themselves have had to endure. My intention here is not to dispute their reasons nor their actions. However, this woman felt hurt. Unintentionally, this doctor had made it clear that preventing births like hers was a good thing. The effect of comments and attitudes like his? "I'm still working through the insidious anxiety of the constant exclusion, rejection, and doubts about my abilities."

My son, in that respect, was extremely fortunate. He did not have to work through the anxiety and pain of being considered second rate by a society which places an extremely high value on intelligence, physical abilities, and good looks. He had the cognitive skills of a 6-month-old at best, so he could care less about achieving and people's opinions. What is more, he never experienced rejection. He would not have been able to define love, but he knew what being loved felt like.

I would be portraying myself as a better person and mother than I am if I told you that I was disability proud from the moment Caleb was born. In fact, learning of the possibility of abnormalities when I had my first ultrasound sent me into a spiral of fear, anxiety, and disappointment. 

Once, on my way to work several years before Caleb was born, I thought about the many families with which I had crossed paths in my role as a Spanish interpreter in a pediatric hospital. I thought about those with disabled children. Silently and confidently, I concluded that I would never complain if I ever had a disabled child. Those families were an inspiration and proof that, yes, we could handle adversity. I was true to my word: I never complained about having a disabled child. The infamous question "Why me?" never crossed my lips. But I was not disability proud.

The day Caleb was born, before we had a diagnosis, I whispered, "Estás bien feíto, hijo." What kind of mother tells the son she is holding that he is ugly? This kind. I could tell something was not right just by looking at him. He did not look like a typical child. He did not look as cute as his brother had at birth.

Then, once the diagnosis of full trisomy 13 was confirmed, we were given literature about it. "These children are able to recognize their family members..." stated one of the papers. "Big deal!" Yes, that is exactly what I thought. "Big deal!"

When Caleb was about four months old, I asked his early intervention teacher about schools in our city. "We have integrated schools, so Caleb would be in a classroom with his peers." "What a joke!" These reproachful and mocking words which I was now applying to my son's schooling in the future had come out of my mouth a few days before when I had seen the picture of a teen with full trisomy 13 who was "graduating" from high school.  

No, I was not disability proud about my son... at first. Eventually, "Big deal! and "What a joke!" turned into "So what!" Yes, so what if he never walked! So what if he never talked! So what if he never learned any math! So what if he always drooled! So what if he always wore diapers! But it took a while. This mother who loved her son also felt ashamed. I was not disability proud.

I would lie if I said I have gotten rid of all my biases. However, this woman's essay has helped me see and understand a little better what it is like for people with disabilities to live in a world which tends to see them as "less than;" to be part of a society which questions their quality of life all the time, to be under the care of doctors who not only question the value of a life like theirs, but who even have the gull to tell them that they can now prevent people with their disabilities from being born!

I hope to learn how to be an ally of people with disabilities. I do not know much, but I know what it is to have a severely disabled child. I know that it is possible to become disability proud. My son is gone now. He died at the age of nine. His "imperfect" life was beautiful and of unsurpassable worth, like everybody else's. Yes, we faced adversity, pain, and sadness. But that is not the whole story: There was love, there was joy, there was laughter. There was a bond which is hard to describe, something you do not experience with a typical child.

Caleb's special education class:

A rainbow of disabilities

Beautiful Headrick from Cuba, full trisomy 13

P.S. If you are interested in reading more about my journey from shame to pride, I invite you to read my essays titled, "Name," "What They Don't Know," and "The Reason for the Name of this Blog."