One Difference Between Inborn and Acquired Disabilities
Adaptation to disability may depend on whether it's congenital or acquired.
Posted December 20, 2021 | Reviewed by Davia Sills
- Most disability work in psychology focuses on people with acquired conditions, but those who were born with their conditions have a lot to teach.
- Personal experience attending disability support groups inspired the author to research adaptation to congenital versus acquired disability.
- Research suggests a congenital advantage in which people who were "born that way" adapt better than those who "became that way."
I first decided that I wanted to meet others who had facial paralysis like me when I was at university. The disorder I was born with, Moebius syndrome, was so rare that I would be extremely unlikely to ever meet someone with it in my local area. I traveled across the country to spend a weekend at the semi-annual Moebius Syndrome Foundation Conference.
The conference was a transformative experience. Suddenly, I was surrounded by people who looked like me. Conference attendees quickly began to feel like family. We shared an instant connection and understood each other in a way no one else could.
Meeting people who acquired facial paralysis
A few years later, I moved to a large city that housed some of the best medical centers in the country. For the first time in my life, I lived near a support group for people with various types of facial paralysis. I was excited to attend my first meeting, expecting it to be similar to the Moebius syndrome conferences I had experienced.
When I first arrived at a grand meeting room on an upper floor of a well-furnished plastic surgery office, I was surprised to find that I was the only person with Moebius syndrome: indeed, the only person with any type of congenital facial paralysis. Everyone else had acquired their facial paralysis, mostly as adults. It turns out that it is much more common to acquire facial paralysis—from conditions like Bell’s palsy, acoustic neuroma, or injury—than it is to be born with it. No matter, I thought, we all look similar to an untrained eye. Surely we’ve had similar experiences.
We went around in a circle and introduced ourselves. Each person gave their name and spent the rest of their time describing how they developed their facial paralysis. Some of these stories involved traumatic injuries or surgical accidents; others simply woke up one day with paralysis. Themes of loss permeated every story: loss of identity, loss of perceived beauty, loss of function, loss of friends.
When it came time for me to introduce myself, my story sounded so different. My facial paralysis was an inextricable part of my identity; I have no idea what I would be like without it. There was no origin story.
When I was born, it was clear that I had some sort of facial weakness. It took two years of my parents’ persistence seeking numerous doctors’ opinions before getting the correct diagnosis. In many ways, I am privileged that my parents were the ones to take the lead in learning about my condition and adapting to it.
Insight into adaptations
As the meeting continued, people mostly talked about the new challenges they were experiencing because of facial paralysis. A woman shared that her favorite weekend morning ritual used to be enjoying coffee and a bagel while reading a newspaper. But she felt that facial paralysis had robbed her of that activity. Now, whenever she put something in her mouth, it fell out onto the newspaper.
I have a lifelong love for reading. Starting at a young age, I read a book or newspaper while eating and never had this problem. At this moment in the support group, I realized that I always prop my reading materials up at eye level. I face forward instead of looking down, so food doesn’t fall out of my mouth. I had never been consciously aware of this adaptation. As I continued to listen in the meeting and others like this, I discovered many other examples of adaptations I had naturally developed. Attending these meetings taught me so much about my own expertise with facial paralysis and allowed me to help others adapt.
I’ve now attended facial paralysis support group meetings in four states and three countries, and I am usually one of the only people with congenital facial paralysis in attendance. I’ve gained so much from attending these meetings: insight, support, and lifelong connections. I’ve worked hard to develop a positive disability identity, and these meetings made me proud of how I adapted.
However, these meetings could also be upsetting at times. In general, people were at these meetings in hopes of recovering from their facial paralysis, something I don’t aspire to because I know it’s not possible for my condition. They didn’t want to live the rest of their lives with facial paralysis like me. Acquiring facial paralysis was often understandably traumatic. Some people refused to leave their houses for months. Some fell into deep depressions. It was hurtful to hear how devastating my reality was to other people. And for the most part, their paralysis was milder than mine.
Including congenital disability in psychology
Sometimes lived experience provides the best research inspiration. After attending these support groups, I began a new line of research examining differences in adaptation between people with acquired and congenital disabilities. Most research in psychology focuses on acquired disability. Indeed, the field of psychology specifically focused on disability is called “rehabilitation psychology.” The name implies a focus on helping people with acquired conditions return to a previous state of functioning. Theories of “adjustment” to disability were usually focused on stages of grief or adapting to the loss.
As I will detail in future posts, research finds that, in general, people with congenital disabilities fare better than those who acquire a disability later in life, something I call the congenital advantage. This may be explained by disability self-concept, which includes disability identity and disability self-efficacy (i.e., confidence in managing disability symptoms). People with congenital disabilities go through their initial development, learn to navigate the world, and form their identities alongside their disability, all at a time when they are the most cognitively flexible. Those who acquire disability must adapt to a changed identity and relearn how to function, putting them at a disadvantage in developing disability self-concept. In one study, I found that people with congenital mobility disabilities had a higher disability self-concept than those with acquired disabilities, which in turn was linked to greater life satisfaction.
Disability and rehabilitation work has neglected to consider the experiences of people with congenital disabilities, minorities within a minority. In addition to the unique resilience that many with congenital disabilities demonstrate, there are plenty of factors—such as a higher risk of experiencing ableism and the role of early family support—that are under-examined. People with congenital disabilities are an untapped resource full of insights about living with a disability. As I can attest, support groups and disability community building can be a great source of insight and resilience. Cross-disability groups could be especially beneficial for people who recently acquired disability to learn from individuals who were born with it.