We need more conversations about disability and employment
People with disabilities often face barriers in the workplace
At my day job, I work in a midsized public library system, which I really enjoy. I help folks find books and other resources and work to make them feel more connected to their community. We don’t charge for our services because we believe in the philosophy that everyone deserves access to information, which makes me feel good.
However, sometimes I wonder if I’ll always be able to do this type of work, or if I’ll reach a point when my symptoms of Charcot-Marie-Tooth disease (CMT) will become so severe that I won’t be able to sustain a career.
When I first started shelving books as a new employee, my co-workers spoke to me about the injuries and soreness they’ve experienced from frequently bending over to pick up books or view them on lower shelves.
A co-worker recommended I try squatting instead of kneeling to reach heavy boxes to prevent back injuries. I’ve also had conversations with children’s librarians about strategies to maintain my stamina. Yet I’ve already had days when my CMT symptoms made filling out book transit orders challenging due to my limited dexterity.
A broad range of experiences
These experiences make me wonder if I’ll have to give up library work sooner than I’d thought. Am I opening myself up to greater health risks with this choice of occupation?
I’ll admit that library work isn’t the most challenging job out there for folks with CMT. But to me, it highlights the importance of recognizing that working while disabled is a very different experience than it is for able-bodied employees.
Those in the disability community have a broad range of experiences when it comes to managing their disabilities while working. What may be an accessible and welcoming workplace to one person may be dangerous and unaccommodating for another.
Recognizing the intersection between disability experiences and workplace experiences is important to understand the profound impact disability can have on a person’s life and to see the depth of untapped potential that is out there.
There are vast dimensions of healthcare and wellness that are impossible to address if we all rely solely on simple clinical understandings of disability and chronic conditions. For example, I know folks in disability circles who don’t think their disability is preventing them from achieving the life they want. Rather, it’s their workplace that’s the obstacle.
For many, life is a struggle that feels like a high-stakes juggling act to address the most immediate concern, whether it’s managing one’s health or one’s personal expenses.
I think it’s important for folks in the disability community to find appropriate outlets to share whether their workplace is welcoming and accommodating or whether it creates unnecessary barriers. It’s not enough that we talk about disability only in terms of our physical health. That narrow scope is actually a barrier to creating empathy and being able to acknowledge the humanity in one another.
Mine is only one perspective, and it’s a fairly privileged one at that. However, I want to do my best to seek other perspectives and hear more stories. I encourage others to do the same. Please share in the comments below.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
About the Author
Geoff Stollard
I was sacked twice for experiencing an epilepsy seizure whilst at work and found there is no effective legisllation in place to help the victim. If the employer says it is your illness which has caused you to be sacked then fine, take them to court. If they suggest you are surplus to requirements then there is no legal action available. I have spoken about this on the BBC but still no effective response from the government. When out of work the only way out is to accept self employment and carry on with life.
Robert Saiff
I’m 83 and I first released that something was wrong when I was in my 40’s. My feet began to tingle and over the years it moved up my legs. I now walk like a duck but it’s hasn’t progress were I walk with a cane. I do walk at night with a walking stick when I take the dog out. I’m able to sleep without a problem. I can still golf and navigate the course when it’s a golf cart path only. To walk any distance I have to sit as I think my duck walk is affecting my hip.
I’ve been told that my high arches in my feet is a sign that I’m susceptible to CMT. I also had my fingers lock up at different times and had them operated on and later I had carpal tunnel operations on both hands. I don’t know if this was caused by the CMT.
Patrice Hill
I was diagnosed almost a year ago with a rare version of CMT. I have apparently been struggling with this all of my life. I am only able to walk short distances before my legs weaken and I have to sit down or I will fall down. I currently use a rollator. It presents a problem for me because I am a nurse. I moved to another position where I don’t have to be on my feet as much, but I often worry about how much time I will have left to do what I love.
Ann Melhorn
I'm currently in the process of applying for long-term disability at my job as an elementary teacher as well as social security disability. I haven't found out whether or not I will qualify for those yet but I could no longer do my job safely. I'm 63 so I'm close to when I was thinking of retirement but still several years away. It reached a point in December where I did not feel I could continue. I have very poor balance it's hard for me to navigate and crowds, even small groups of people is difficult. I talked with several of my doctors and they agreed that they would support a claim for total disability. That does not mean I will get it. However, I have no doubt that in terms of my job requirements that I am disabled. And it's very hard for me to imagine what kind of a job I could do at this point that would earn enough money for me to be financially solvent. This was not the life I imagined for myself and I'm still in morning for that life. But you're right conversations about disability are important.
Teresa Burgess
I managed to have a 40+ year career as a nurse but the last 15 years were in a mostly sedentary job. I am now a freelance writer at age 67.
Lonna H.
Great article Young! I met you back at the CMTA conference in St. Louis in 2019 I believe.
I have 3 genetic illnesses that effect my nerves and muscles. One being CMT1A.l, I found out in June 2016 and applied for Disability about 6 months later. I wasn't diagnosed with much more so I was approved for Disability because I have CMT. it took 18 months and 2 appeals. I had to pay a lawyer. It was worth it tho. I worked during that time. I documented everything. I took photos of my hands swelling or other visual symptoms and put text on the photos of my symptoms in that moment. It believe it helped a lot. I had to meet with a judge. He was extremely nice and fought for me while talking to SSI. He even told me to work as long as I could since I was self employed. There are good experiences and bad. It takes time so don't give up! Goodluck!
Dan
You are right on. Hidden and progressive disabilities like mild to moderate CMT team up with cultural biases against aging and older people limit our employment options and complicate our work, but people (and governments) may not see us as having any visible problems to justify our behaviour — pain, fatigue, brain fog, need for more rest, etc.
Donna Harrison
My granddaughter was diagnosed at the age of 5 with CMT, she is now 8 yrs old and both hands and legs are affected. I pray daily for a cure or to slow progression of this disease. She is in pain all the time and had a bad sprain in leg. She is constantly falling but one of the bravest people I know. Walking is difficult even with wearing afo braces and has hand splints at night. She wants to be a nurse or police
Officer I tell her you can be whatever you want to be.