A primer against ableism for the Duchenne parent community

Preface

My two sons have Duchenne muscular dystrophy. Since their diagnosis 3 years ago, I have enjoyed the supportive environment of our Facebook parent groups. I have also been trying to wrap my mind around disability in the desire to give my boys the best shot at life I can. Knowing this is important to all members of our community, I wrote this in the hope it would help toward that end. Though I use all masculine pronouns, all that I say is also applicable to women with Duchenne.

What is Ableism?

Ableism is “discrimination and social prejudice against people with disabilities or who are perceived to have disabilities.” Basically, it is an approach toward physical or mental impairment based upon a series of misunderstandings and/or fears that our society teaches us. It draws a sharp distinction between the “able” and “disabled” and encourages a patronizing attitude from the former toward the latter. This attitude is epitomized by the following excerpt:

 “What if the twist of fate that we hear so much about really happened? What if, when the gifts and the pains were being handed out, I was in the wrong line?” Lewis began . “What if I had Muscular Dystrophy?” was its title.

“I decided after 41 years of battling this curse that attacks children of all ages, I would put myself in that chair, that steel imprisonment that long has been deemed the dystrophic child’s plight,” he continued.

“I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I’m not as fortunate as they are,” Lewis wrote, halfway into the piece. He had so far managed to include nearly every term or concept offensive to disability rights advocates, and his next sentences would work in the others: “I’d like to play basketball like normal, healthy, vital and energetic people. I really don’t want the substitute. I just can’t half-do anything. When I sit back and think a little more rationally,” he continued, “I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.”

Excerpt taken from “A Test of Wills: Jerry Lewis, Jerry’s Orphans, and the Telethon” by Mary Johnson

This kind of condescension is intolerable and in need of principled resistance. Toward that end, let me make these suggestions to our community:

Resisting Ableism

First, we should not say or imply that disability is a tragedy. Lexico defines the word as meaning, “A play dealing with tragic events and having an unhappy ending, especially one concerning the downfall of the main character.” Disease is one of the struggles of life, but there is more to your son’s life than disease. There are also gifts and opportunities for joy. Are you willing to change and grow in order to seize them?

It is difficult to accept loved ones’ struggling, but this can be carried on to an unhelpful extreme. Implicit in some of the groans of genuine parental grief I have read seems to be the assumption that, apart from Duchenne, their son wouldn’t have to struggle with anything or even face death one day. The struggle as parents is real, but we must gently and firmly confront our own self-pity. Don’t try to rescue your son from being human. Everybody has to die someday: in the end, the question is, did they live?

Suggested reading:

The God I Love by Joni Eareckson Tada

Miracle Boy Grows Up by Ben Mattlin*

Such a Pretty Girl by Nadina LaSpina*

(*Note, probably to debunk the myth of the “asexual crip”, these books have explicit sexual scenes. Tada’s book makes the same point more modestly.)

Secondly, on a related note, though some will disagree with me, don’t ever imply that your son or those like him would be better off dead. I haven’t ever met a parent that would say that explicitly (though I am sure they exist), but it is frequently implied in discussions of family planning after a Duchenne diagnosis. This is an inherently complicated decision for any couple to make with most of us somewhere between the two extremes of no birth control and no children. I’m not telling you your business. I’m just telling you what a consistent affirmation of the goodness of life with Duchenne entails.

I will call it like I see it: the common proposal, explicit or implicit, of prenatal testing with the intention of aborting a Duchenne baby assumes that you and/or they are better off with them dead. That it is what it means. Logical trains don’t stop just because you wish they would. Don’t say that or accept it when someone else says it.

If you want to say you will deny yourself more children because you want to be better able to care for your son, that’s your call. That doesn’t undermine his sense of his prospects in life like saying, “I wouldn’t want to bring another child with Duchenne into the world” or “I couldn’t live with bringing another child into the world to suffer.”

Thirdly, don’t infantilize your son. Let him grow up and treat him with respect. Don’t “spoil” him, don’t drown him in parental flattery, don’t expect less of his behavior and academic efforts, don’t talk about him like he is a small child when he isn’t, and don’t be overprotective. In a critical scene in the Netflix documentary “Crip Camp“, disabled teenagers held a round table discussion about their parents (a scary event for all parents, no doubt): they all agreed that they felt like their parents were holding them back more than their disability. Infantilization undermines the self-respect and emotional maturity children need to become adults.

Fourthly, don’t be afraid of wheelchairs and other assistive devices. Repeat after me, “Walking is not better than rolling.” Walking might be an appropriate means for you to get around, but it might be exhausting, dangerous, and frightening for your son. Keep in mind that while many parents deeply grieve the transition to full time use of a wheelchair, their sons often speak in hindsight of what a relief it was to no longer be expected to walk. At some point, an insistence on walking is not for the sake of our sons, but for our own loyalty to the “cult of normalcy”.

In “Such A Pretty Girl“, polio survivor Nadina LaSpina writes about how even her loving father’s evident disgust for her wheelchair caused her to accept many painful surgeries, fall-related injuries, years of exhaustion, and even elective amputation in an effort to walk when she felt safer, more capable, and more free in her wheelchair. Let’s not do that to our sons.

Fifthly, proactively remove barriers from your son’s life. Place a priority on making home modifications that will increase and prolong his agency. Don’t let conventional architecture and decorating trends be a source of disability in your son’s life.

(As a home builder, this is a matter of passion for me. We are currently designing an accessible home for us to build in the near future.)

Suggested resources:

Housing and Home Modification @ PPMD

Home Modification Occupational Therapists Association – Home Evaluation

National Association of Home Builders – Certified Aging in Place Specialists Directory

Universal Design Living Laboratory – Seven Principles of Universal Design

(Note: this list isn’t at all comprehensive. I hope to find and share more later.)

Sixthly, to avoid a “deficits perspective”, don’t let doctors and other parents be the extent of your education about disability: read articles and books written by disabled people. A rallying cry of the disability rights movement is, “Nothing about us without us!” They’re right. Find disabled authorities on disability. Encourage and help your sons to find proud disabled role models.

Conclusion

We are not trying to cure “half-persons”: each of our boys is already whole. We’re blessed to know them and to be turned from our dedication to the “cult of normalcy” by them. Instead of sentimentally wrapping our sons in bubble wrap in preparation for a sad life, let us create affirming homes and communities in which they and others like them can grow up knowing that their lives are good and worthy of all we can give them.