The world of disabilities is often held up as an example of diversity, but sometimes I wonder how often the people citing this example stop to think about the vastness this world contains. The word “disability” can refer to anything from an anxiety disorder to a rare genetic deletion.
There is a variety of factors that shape specific disability communities that are often not considered. For example, whether the disease, disorder, or syndrome is progressive. Whether it causes physical pain. Whether it creates intellectual disabilities. Whether it involves behavioral disturbances. Whether any disease-specific medications, therapies, or treatments exist. Whether it robs people of the ability to speak and/or advocate for themselves.
All of these things shape the obstacles a person must overcome, the ways in which they wish they could change the world, and the kind of emotional strength they need to cultivate. In short, these factors help shape that person’s worldview.
This is no less true for the parents of disabled children. To understand my daughter’s disease is, in large part, to understand my priorities, values, beliefs, and struggles. My five-year old, JJ, has Rett Syndrome—a rare, progressive genetic disorder. Bit by bit, it has taken away her ability to speak, walk independently, use her hands, and chew or swallow correctly. How would I describe her? JJ is small, nonverbal, intelligent, affectionate, conventionally attractive, engaging, and socially adept. She has epilepsy, eats through a feeding tube, communicates with an eye-gaze device, and travels in a wheelchair.
The way Rett Syndrome affects my daughter also affects the obstacles I do and do not have to face as her mother. For example, I have no problem connecting with my child emotionally. I do not have to deal with any of the struggles that accompany intellectual disabilities. It is easy to find helpers willing to care for her, and I do not need to fight back against society’s conventional standards of beauty. There is no need to fear people’s opinions of my daughter’s behavior when we are in public.
But just as there are obstacles I sail past, there are others that stand in my way. I have to work hard to ensure that JJ is included in events and that spaces are made accessible to her. I focus a lot of energy on showing people how intelligent and aware she is. I must also often encourage others to speak to her directly and in an age-appropriate way.Because her care is so all-consuming, I have had to give up my career.
On an emotional level, I struggle with an extremely volatile, progressive disease that steals my daughter’s skills and abilities only to return them unexpectedly. Health crises are common with her syndrome, as is physical suffering. I work hard to manage my expectations, curb my fears about the future, and help ease my daughter’s pain.
I did not grasp just how much Rett Syndrome and the Rett community have shaped my worldview until confronted with a belief system that clashed with my own. I came across it in a memoir written by the mother of a girl with a rare chromosomal disorder. The book told the tale of a mother learning to love her daughter unconditionally and fighting back against a medical establishment that wanted to see her girl as “broken” and in need of “fixing.”
The author described a journey that ended in acceptance of her daughter’s body and appreciation of its innate perfection. The mother realized that the girl did not need a cure; her syndrome was simply how her body was designed.
This is a beautiful conclusion that most readers would not question.
I, however, am not most people. Instead, I am a mother who has a very different worldview, thanks to my own daughter’s rare disease. As the main theme of the book began to emerge, I kept comparing that mother’s experiences with disability to my own. While we had some struggles and obstacles in common, our belief systems were radically different.
Because I was curious, I googled the syndrome described in the book. I found nothing about gene therapies, medications, or clinical trials in the research pipeline. Google simply told me that there was no cure for the disease and that, “Treatment plans are tailored to manage the symptoms.”
It suddenly made sense to me that a mother raising a child whose disease and symptoms were a permanent, foregone conclusion would work hard to cultivate radical acceptance of her child. It did not serve her in any way to want to “fix” her child because there wasn’t anyone or anything to do the fixing.
In many ways, I agree with the points the author was making. I believe that all people, no matter how they are created, should be viewed as beautiful. And I think that no one has more or less worth based on their abilities. The words “broken” and “fix” also make me extremely uncomfortable. But what if we shifted our language? What if, instead, we talked about body processes that don’t function correctly? What if we didn’t talk about “fixes,” but rather, about therapies and medical interventions?
In my daughter’s disability community this type of language is commonplace. This is in great part because we have a research pipeline rich with possibilities. JJ has already begun regaining skills she lost, thanks to a new drug that just came on the market. A gene replacement therapy for her syndrome is also in clinical trials and showing promising results. In the world of Rett Syndrome, we are all fighting hard for improvement, progress, and advancement.
To me, my daughter’s body is not perfect as it is. Not only does her disease steal important abilities, but it often causes her much pain and suffering—something that didn’t seem to be the case for the little girl in the book. There is a reason Rett parents refer to the syndrome as “the Rett monster.”
Most people with Rett are very aware of their surroundings but trapped in a body that struggles to do the most basic things, such as breathe, chew, or swallow. Because of this, many end up with anxiety disorders and need medication to manage their fears and worries. Pain caused by things like GI issues and contracting muscles can also lead to mental anguish and behavioral disturbances—especially in a population with no verbal language. Many times, I have watched my girl scream, pull out her hair, and bite herself when she couldn’t tell us where her pain was located.
In addition to her pain and suffering, my daughter’s level of cognition—also very different from the girl in the book—plays a large role in how I view her condition. JJ has used her speech device to tell me that she wishes she could speak and didn’t have a feeding tube, to indicate jealousy of other children’s abilities, and to beg people not to treat her like a baby.
I am extremely thankful that JJ has many body functions that benefit from her new medication and still others that could improve tremendously with the gene therapy that is being developed. In my world it is, in fact, dangerous to think like the author of the book. Because with radical acceptance there would be no fundraising. No clinical trials. No genetic therapeutics. And, most importantly, no eventual cure.
It is not by accident that our community has such a rich research pipeline and multiple drugs and gene therapies in clinical trials. The two main organizations focused on Rett Syndrome—the International Rett Syndrome Foundation (IRSF) and the Rett Syndrome Research Trust (RSRT)—are very devoted to funding medical research.
This is particularly the case for the RSRT, which was launched in 2008 by Monica Coenraads, a Rett mother who had no scientific background. Instead, Monica had a belief that the disease stealing her daughter’s abilities needed to be stopped. The organization she founded is focused solely on finding genetic therapeutics to correct the mutation that causes Rett Syndrome. In 2008 this was a radical goal, and many were skeptical of it. But Monica used her views about her daughter’s disease as motivation and refused to give up.
I use myself, my daughter, her syndrome, and the Rett community as examples because there is something I find particularly worrisome about the current discourse around disabilities. Despite the wide variety of disabilities and syndromes, there is a dominant narrative that many people—including the author of the book—tell about all people with disabilities. Namely, that disabled people and their bodies are beautiful and perfect the way they are. That people with disabilities are only in need of love and acceptance, not of therapies or interventions.
I worry about this narrative, not only because it is never a good idea to overgeneralize, but also because when carried too far, it can be highly detrimental to particular groups of people (like my daughter). JJ has taught me that it is possible to love, accept, and cherish someone for their differences while still working to help improve their body functions. In our world at least, these two things are not mutually exclusive.
When JJ was a young toddler, she was misdiagnosed with autism, which is quite common for people with Rett. This meant that I spent two years immersed in the autism community. During that time, I fought against the gravitational pull of the dominant narrative about autism—that autistic people do not need any treatments or a cure because they are fine just as they are. Parents who sought therapies or treatments for their children were often publicly scorned and ridiculed. People who supported Autism Speaks, a large non-profit dedicated to raising awareness about autism, were treated with similar disdain because the organization supports finding a cure for autism.
It is true that many people with autism function well in the world, advocate for themselves, and have a right to be proud of their identity. But I still felt disheartened. Their worldview didn’t serve me, or many of my fellow parents, well at all. I had a child who screamed for hours every day, pulled out her hair, and bit herself bloody until therapists taught her how to soothe herself and regulate her emotions.
On private Facebook groups and in hushed conversations, I came across many other families dealing with similar behavioral issues. These parents longed for help, resources, medications, and interventions that would give their child and their family some peace and quality of life. Unfortunately, our children were not in a position to advocate for any of this themselves because they belonged to the 25%-35% of autistic people who are minimally verbal or nonverbal.
Though I was devastated by my daughter’s correct genetic diagnosis, it was a relief to connect with other Rett families. Finally, I became part of a community of people whose belief system had been shaped in the same ways that mine had. I was able to voice dislike for my daughter’s disease and the ways in which it warped her body. I was also allowed to grieve the abilities she had lost, profess my wish for a cure, and fundraise for that cure. In that small corner of the world, I was allowed to exist outside the dominant narrative about disabilities.
I take great joy in the fact that our planet encompasses such a variety of people who all have different ways of looking at things. But everyone sees the world through a lens created by their own struggles, obstacles, abilities, backgrounds, and experiences. Worldviews are just that. Views. They are the ways in which we see the world, not the way it is. My daughter and her syndrome have taught me, over and over again, just how important it is never to forget that.
How would you describe the community to which you belong? Has that community shaped the way you view the world and the ways in which you want to change it? Let me know in the comments below.