StemCell Therapy

Keith McArthur is the CEO of CureGRIN Foundation and creator and host of Unlocking Brysons Brain.

Around Fathers Day in 2018, scientists told me the unthinkable that it might be possible to cure my son Brysons rare genetic disease.

Bryson has GRIN Disorder, caused by a mutation in his GRIN1 gene that prevents him from walking or talking or feeding himself. Even though hes 13, his brain functions at the cognitive level of a toddler, according to a recent report from a developmental psychologist.

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So when researchers told us his symptoms might some day be reversed, I dedicated my life to connecting scientists and pushing for a cure.

But the more I learn, the more I struggle with an important ethical question: Is it ableist to want to cure my son?

Cure is a loaded term. For parents of kids with rare diseases, its a no-brainer. Of course, we should want to give our kids the life they were supposed to have. Of course, we should want to help them.

But for many people living with disabilities, cure implies theres something wrong with them, something that needs fixing. And some people who rely on wheelchairs say that even if there were a cure that could allow them to walk, they wouldnt want it.

As Brysons dad, Ive always thought of myself as an advocate for disability rights. I proudly stood up to the local school board to argue people with special needs deserve more of a say about where they go to high school. Ive leveraged my privilege to complain about broken elevators and insufficient handicapped parking.

And it felt like my efforts to bring together researchers and push for a cure was the ultimate act of advocacy for my son and others like him.

But the other day, someone I dont know called me ableist.

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The accusation came in a negative review for Unlocking Brysons Brain, a podcast series about my son. The reviewer identified as someone with a lifelong physical disability and said my familys obsession with getting a cure made them feel uneasy and uncomfortable.

Im sorry, but this guys is not a disability advocate. Hes an ableist who is obsessed with transformation, the reviewer wrote.

The podcast has elicited positive feedback from many other people with disabilities; so Im wary of overreacting to one negative review. But as much as I want to push back and say, Thats not who I am, theres part of me that wonders whether theres truth in that review.

Am I obsessed with cure? Maybe I am. In addition to my search for a cure for Bryson, and my podcast about this search, Im also chief executive of CureGRIN, an organization focused on finding a cure for GRIN Disorder.

Even my Twitter bio identifies me as a rare disease dad searching for a cure. So yes, Ive internalized this search for a cure and made it part of my personal identity.

But does that mean its wrong?

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It doesnt feel wrong. After all, I worry that Bryson cant communicate his wants and desires, that he cant pilot his own wheelchair, that he cant defend himself from those who might want to do him harm. Im worried about his violent episodes when he flails around until hes covered in bruises and bites himself so hard were worried hell tear an artery. Im terrified about whats going to happen to Bryson when his mother and I arent around to look after him. Dont I owe it to Bryson to push for medicines that can give him more agency and security?

But how much cure is too much? Is it moral to push for safety and autonomy, but ableist to wish for a cure that could make Bryson neurotypical?

Because if Im being honest, thats what I want. If there were a magic pill that could make Bryson fully neurotypical, I would give it to him. I want him to be able to walk on his own, and feed himself, and tell me what his life has been like for the past 13 years. And when hes grown up, I want him to be able to live independently, and have a job, and get married and have kids.

Bryson is perfect; hes extraordinary. But I want more than that. I want him to be able to choose to be ordinary.

The trouble is that Bryson cant choose. Yes, hell sometimes make simple choices, for example by reaching to indicate if he wants pudding or applesauce as a snack.

But when I ask him whether he wants me to continue on with this journey to find him a cure, he just looks back at me with his big beautiful eyes.

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So even though I understand that cure is an ethical quagmire, I feel compelled to carry on.

The question is how to push for a cure for Bryson without making others living with disabilities feel uneasy and uncomfortable.

As part of my journey, Ive spoken with ethicists and activists with disabilities about the concept of cure and how to make sure I pursue my quest in an ethical way.

Part of the solution is to make sure Im giving Bryson as much of a voice as possible. Even if he cant answer complex questions around a cure yet, its important that Im always asking myself: What would Bryson want? And is it different from what I want for him? And if there are partial therapies in the future that could allow Bryson to communicate, I need to be willing to listen to what he has to say about this journey for a cure.

Its also critical that I recognize that a cure for Bryson may never come. And even if there are therapies that can make a radical difference in his life, therapies that can provide safety and agency, they are not likely to make Bryson neurotypical. Bryson is likely to live out the rest of his life as someone with high needs.

And thats okay. Because Bryson is already perfect. Its the world that isnt.

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So if the anonymous reviewer is right, if I really am obsessed with transformation, then I need to redirect some of that obsession away from changing my son and toward changing the world. Because thats another way I can help him to be safer and have more autonomy by working to dismantle the barriers, both physical and systemic, faced by all people living with disabilities.

Finally, its critical that I continue to cherish Bryson for who he is today, a vibrant teenager who knows joy and sadness, an extrovert who loves being around people, a loving soul who wraps his arms around his dad and pulls me close, showering me with wet toothy kisses. How many fathers of able-bodied kids will get such a wonderful gift from their teenage sons this Fathers Day?

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See the rest here:
I want to cure my son of his rare genetic disease. Is that wrong? - The Globe and Mail

This entry was posted on June 20, 2020 at 10:50 pm and is filed under Genetics. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |