Learning to Accept a Visible Disability This Disability Pride Month

There’s no way to get around the fact that talking about disability can be tough. As a society, we tend to label a person’s disability experience under two broad categories: invisible and visible.

The thinking goes that an invisible disability is something that can be hidden from view—oftentimes mental health disabilities are labeled this way—while disabilities that require mobility aids tend to be classified as visible.

That framing can obscure the reality of some disabled people, especially when it comes to mental health. This July, during Disability Pride Month, we’re looking at how disabled people with a variety of experiences came to accept themselves and their bodies in whatever form they have taken.

What if You Can't Hide It?

For Emily Ladau, disability has been an ever-present (and visible) part of her life. Her disability is a genetic condition, Larsen Syndrome, one that both her mother and uncle have.

She says that despite growing up with disabled family members, during her school years she tended to only identify as disabled when it was advantageous or required, like having to request a wheelchair-accessible bus for school field trips.

In her family, Ladau says there was a lack of knowledge when it came to disability as a culture and as a positive. 

“I initially wasn't really able to come to terms with it because I didn't have anyone telling me it's something you should be proud of. And so I would try to embrace it when it was convenient for me, and then reject it when it wasn't.”

Ladau, who has since written a book called "Demystifying Disability" for Penguin Random House, says that it wasn’t until college that her understanding of her own disabilities began to shift. 

“I went to a mainstream public school, so I was with all non-disabled kids. And then, the best compliment that you could pay me was, ‘I don't think of you as disabled,’ or, ‘I forgot, you use a wheelchair.’ And as I got older…I began to start realizing that I was being tokenized for my disability and I was being, on the one hand, treated as like, the spokesperson for disability. And, on the other hand, being told that people didn't even see me as disabled. And I was so confused, but I was like, ‘I need to figure this out for myself.’”

Finding Departure Points Key for Practitioners

From a clinical perspective, supporting a disabled person in understanding their identity is something that takes time. Del Camp, MS, LPC and vice president of clinical operations at Ozark Center, says that supporting disabled patients means starting with what he calls a “north star."

Camp says, “What you can't lose is what brought them there in the first place. Because that is the thing that broke through all of the stigma. And that is the thing that animates them toward feeling better. And if you ever lose sight of that, they're not going to come back for treatment.”

Camp says that training in the field often focused on seeing the person before the disability and using person-first language (eg. person with a disability). However, with many disabled people choosing to use identity-first language like has been used throughout this article, he also says that practitioners need to step back and process how their patient identifies themselves in relation to their disability in order to provide the best support. 

“I think it's critical for whatever provider to understand the phenomenological view of the person who's coming to them so that they can begin to understand more of how they can be a better help. Because if you start off with the wrong perspective on how that person views their struggles, then you're not gonna get anywhere in working with them.”

Understanding the Intersection Between Mental and Physical

Amanda Finley counts herself among those who identify as having multiple disabilities. She was diagnosed with bipolar at 23, but it would be more than two decades before she became a COVID-19 longhauler in 2020. She says that, for her, there really is no “finish line” when it comes to her journey of self-identification with disability. 

“I accept the bipolar diagnosis, but I feel like I'm not there yet. Maybe in terms of accepting I can be on disability and have that support. But yet, I have this rich life. I have done so many things. And I want to keep doing things. So I'm not sure where I am on this journey right now.”

Finley, who founded a Facebook group for COVID-19 longhaulers that now includes more than fourteen thousand members, says that she feels more comfortable being open about the physical symptoms of COVID than she does her mental health disability.

“I think I've had a much easier time accepting Long COVID than I have with bipolar even though I don't mind talking and sharing about it. And I think that reflects how we view mental health versus how we view physical health. For some reason, it just feels less stigmatizing to accept the physical disability than it is the mental disability.”

Questions To Ask

One issue for many with physical disabilities is that mental health can often be left out of the equation when it comes to a person’s care team. For Ladau, she says none of the medical professionals she worked with growing up identified with disability or knew how to talk about it competently. 

“[It was the] total lack of professionals that kind of made me turn inwards because every time I would talk to a mental health professional, every time I would talk to a medical professional, none of them were disabled. None of them understood the experience of disability and none of them really got it.”

Ladau says that, from her vantage point, more thought needs to be given to the intersections between physical and mental disabilities.

“Sometimes the impacts of being physically disabled can take a toll on my mental health, and sometimes my mental health can make my physical disability feel more difficult to handle. As I was growing up, I was always told, ‘Oh, your legs don't work but your mind is fine.’ And that's like one of the evilest things you could ever say. Because you're making a judgment call on people with mental health and cognitive disabilities, and saying like, ‘Oh, you're not like those people.’”

Finley says that her experience of multiple disabilities, both visible and invisible, allows her to be a better advocate and to identify the support long haulers can receive from those with disabilities that have similar symptoms, both in terms of physical and mental health, but less of a societal focus; conditions  like myalgic encephalomyelitis (otherwise known as chronic fatigue syndrome), or Ehlers-Danlos syndrome (EDS).

“... [They] saw these things that we were going through and they were like, ‘Hey, that looks like us.’ And they've been hacking their way through a different jungle, similar jungle but still, they've learned lessons that we need. We are at a really big advantage because we have their experiences. But we have the global spotlight right now.”