Curing or Living with a Disability: Your Choice Would Be… (Commentaries)

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AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON)
AND MATTHEW COOKE, DDS, MD, MPH

“Everyone’s brain is different. Brains are like snow flakes – no two are alike.” 1
“There is tension within the disability community between
curing the disability and living with the disability” 2
“…with Down syndrome, the general emphasis is to celebrate the strengths of the syndrome,
whereas with autism, the focus is on finding a cure.” 2

The parent advocate mother of a 21-year-old with Down syndrome explained that the family who has a child with Down syndrome is much different than that of a family facing autism because the diagnosis of Down syndrome is at birth. “Parents of children with Down syndrome simply want to increase the quality of life for our children… I wouldn’t change [my son] for anything because without Down syndrome he wouldn’t be the same person, and he has such beautiful, loving qualities. But if I could cure his medical issues, help him find a good job, or do anything to make his quality of life better, I would.” 2

“There is a meaningful need for work to find cures for disabilities, but we don’t want to go changing people to fit our world. We currently structure the world for typical kids. We should be structuring the world so that we do everything we can to make the lives of children with disabilities easier.” 3

• “There is a dire need in the religious culture in America to have intense education and faith. We need to have more honest conversations on faith and healing related to disabilities.”

• “What is the prospect for curing a brain based disorder? I don’t know what that looks like for my son. We try to be realistic while never stepping on hope.” 3

• “While disabled people share certain lived experiences, everyone is unique, and there is no one right answer to how to feel about a cure.”

• “(Compared to) people who have become disabled due to an injury… I have never known any difficulty… because I was born with my disability… Although nearly every disabled person I know would not want to be cured, I don’t know every single disabled person in the world.”

• “I believe that no matter… the extreme desire for a cure should not outweigh the need for equal access and equal treatment. (emphasis added) The desire for a ‘cure’ should not come at the expense of the desire for equality, and vice versa.” 4

• “I often look at my son and think one word: PERFECT. (sic) He is perfect. I feel it in the core of my being and I love every aspect of his personality. I wouldn’t change him. He’s amazing and the world is a better place because he is in it. But, if you told me I could wave a major wand and ‘cure’ his disabilities (he is blind, can’t speak and is in a wheelchair), would I do it? Yes, in a heartbeat. Is that contradictory of me? Perhaps, but I also think a mother’s love can easily encompass both thoughts. I love him dearly just as he is, but I’d also do anything I could to make his
life easier.”

• (The response from)… a group of special needs moms to the question, ‘if you had a magic wand that could ‘cure’ your child’s disability, would you use it?’ 57% replied ‘yes’, 43% replied ‘no’.”

• “People may think we are crazy and they say every day I don’t know how you do it. I say, I do it because they are mine no matter what and I love them and I wouldn’t change them ever, they are beautiful just the way they are. I just want to give them a little extra that everyone deserves. I would fight to my last breath for all of my children and I have.”

• “I wrestle with this my head. Yes, I would have to go with the yes (to waving the magic wand) if only because I had him at age 36, and I can’t live forever. I would hope that it wouldn’t change his core personality, which is fabulous. But he is so low functioning and high needs, I would love for him to not be dependent on others if I could change that.”

• “Three years ago I would have screamed Yeah!… But now I wouldn’t change a thing. She is amazing just the way she is.”

• “No, because I don’t think I could ever adjust to life as a sighted person. I have lived my life as a blind person and have lived a good life and I am not sure if I could have ever mentally accepted my life as a sighted person.” 5

• “When it comes to my physical disability (a combination of several autoimmune disorders), I’m incredibly grateful that there are medicines out there that allow me to function and manage my chronic pain… Sure, some days I think a cure would be nice, but it’s not one of my priorities in life.”

• “When it comes to my Asperger’s, I would categorically deny any form of cure. To put it bluntly: this is the way my brain works, and for all that there are challenges, there are enormous upsides too. This is the world I see and the world I’ve built for myself, and you don’t get to mess with that.”

• “Does that mean no one wants to be cured? Of course it doesn’t. Plenty of people do, and that’s their good right. But I’d still feel confident in saying most of us don’t think about cures on a daily basis (or, in fact, about our disabilities). After all, this is our normal. This is who we are. And we can be perfectly happy just the way we are, thank you very much.” (sic)

• “…if the only happy ending the writers can imagine for the character is to magically lose their disability, this could be a little depressing for disabled people living in the real world… (It’s) not because we can’t be cured. Not because we won’t be cured. But because it means we aren’t recognized as people but only as labels, not as characters but only as characteristics.”

• “I don’t have to be cured to be happy. I don’t have to conform to the physical notion of perfection (whatever that is) to be a whole person. I don’t feel physically better when I’m kinder, gentler, braver. Nor am I evil because my legs don’t always work.” 6

• “Of course we should get rid of a disability if we can! But I’d like us to be suspicious. My daughter has Down syndrome, and I’m quite happy with her just the way she is. But here’s where it becomes a bit tricky, for me and for other disability studies scholars… After all, who’s in favor of spinal cord injuries? What’s wrong with curing a disease, or remediating a syndrome, or alleviating an injury? Well, right, but when you start talking too aggressively about ‘curing’ or ‘eradicating’ certain disabilities, some of us get kinda antsy…”

• “If there’s a treatment that would allow my daughter to have less pain, I’d be open to it. But (she’s) not in any pain unless she falls on her knees or touches the hot stove. She’s a perfectly healthy, happy, robust person in the world. This isn’t true for all people with disabilities, and some of these individuals would like treatments. But I don’t want a treatment that would change (her) thinking.” 7

BUT AREN’T SUCH DISCUSSIONS JUST THEORETICAL?

Maybe not! While many disabling conditions may be beyond “scientific magic wands,” we are living in period when yesterday’s hopes have become today’s reality.


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FIGURE 1. NOW HEAR THIS?: A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. The implant consists of an external portion that sits behind the ear and a second portion that is surgically placed under the skin.


Cochlear implant: “In October 1982, in Melbourne Australia, the first cochlear implant was turned on and 15 minutes later Graham Carrick could hear for the first time in 17 years. As of December 2012, approximately 324,200 registered devices have been implanted worldwide. In the United States, roughly 58,000 devices have been implanted in adults and 38,000 in children. 8,9 (See Figure 1)

Yet there were those who were against the use of this new technology that would interfere with the “deaf culture.” Hearing people often think of deafness as simply “an inability to hear.” Being deaf, though, is about more than just whether or not a person can hear—it’s about being part of a community with its own history, values, and culture. 10

Stem cells: have the remarkable potential to develop into many different cell types in the body during early life and growth. “In addition, in many tissues they serve as a sort of internal repair system, dividing essentially without limit to replenish other cells as long as the person or animal is still alive. When a stem cell divides, each new cell has the potential either to remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell.” 11

“People with Parkinson’s disease don’t have enough dopamine – a chemical that allows messages to be sent to the parts of the brain that control movement and some forms of thinking. The disease targets and kills dopamine-producing nerve cells, or neurons…Scientists are investigating how regenerative medicine and stem cell science could be used to treat or prevent the disease.12

Microprocessors: The microprocessor, also known as the Central Processing Unit (CPU), is the brain of all computers and many household and electronic devices. Consider the astonishing developments in the last few decades – the computers used by Neal Armstrong and Buzz Aldrin in the 1969 Apollo XI landing on the moon had less capacity than today’s handheld internet phones which have become an added appendage to almost all young and old in today’s world. This ability incorporates these units in almost anything we can imagine to permit individuals to once again walk, regain employment and to increasingly carry on activities that most of us take for granted.

Is it too soon to continue discussions of the “what ifs” for individuals with disabilities? Actually, we need to catch up with developments that are occurring in an exponential fashion which could and will transform our lives and those of our children and grandchildren and of those who will follow.•

ABOUT THE AUTHORS:
H. Barry Waldman, DDS, MPH, PhD – Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: h.waldman@stonybrook.edu
Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.
Matthew Cooke, DDS, MD, MPH is Associate Professor, Departments of Anesthesiology & Pediatric Dentistry University of Pittsburgh School of Dental Medicine Pittsburgh PA; Assistant Clinical Professor, Departments of Oral & Maxillofacial Surgery and Pediatric Dentistry Virginia Commonwealth University School of Dentistry, Richmond, VA.


References
1. Reitman R. Brains are different; in Reitman H, Fizzano P, Reitman R. Aspertools: The Practical
Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity.
Deerfield Beach Fl: Health Community Inc. 2014
2. Wetzel J. Researchers discuss ethical considerations of ‘curing’ disabilities. Available
from:http://news.vanderbilt.edu/2011/04/curing-disabilities-ethics Accessed May 4, 2016.
3. Brothers K. Helping families. Available from: http://news.vanderbilt.edu/2011/04/curing-disabilitiesethics
Accessed May 4, 2016.
4. Ladau E. Why curing disability should not outweigh equality. Available from:
http://wordsiwheelby.com/2013/10/curing-disability-should-not-outweigh-equality Accessed May 5, 2016.
5. Wonderbaby.org. If you had a magic wand that could “cure” your child’s disability, would you use it?
Available from: http://wwwbaby.org/articles/would-you-cure-your-childs-disability Accessed May 5, 2016.
6. Nijkamp M The trop of curing disability. Available from: http://disabilityinkidlit.com/2014/03/07/marieke-nijkamp-the-trope-of-curing-disability Accessed May 5, 2016.
7. Becker AJ. My Suspicions about “curing” Down syndrome. Available from: http://www.patheos.com/blogs/thinplaces/2013/10/my-suspicions-about-curing-down-syndrome Accessed May 5, 2016.
8. National Institute on Deafness and other communication disorders. Cochlear Implants. Available
from: https://www.nidcd.nih.gov/health/cochlear-implants Accessed May 5, 2016.
9. Cochlear celebrates 30 years of hearing revolution. Available from: http://www.cochlear.com/wps/wcm/connect/au/about/cochlear-30-anniversary. Accessed May 5, 2016.
10. Deaf Culture facts that might surprise you. Available from: http://hubpages.com/education/Deaf-Culture-Facts Accessed May 5, 2016.
11. National Institutes of Health. Stem Cell information. Available from: http://stemcells.nih.gov/info/basics/pages/basics1.aspx Accessed May 5, 2016.
12. Euro Stem Cell. Parkinson’s disease: how could stem cells help? Available from:
http://www.eurostemcell.org/factsheet/parkinson%E2%80%99s-disease-how-could-stem-cells-help
Accessed May 5, 2016.

Exceptional Parent Magazine; October 2017