What You Assume Can be Hurtful
I am a disabled woman. One of 53 million with disabilities living in the US. *CDC 2015
This statement can be extremely liberating or it can be extremely devastating. In a perfect society, disability would not have the same connotations that it does in ours. The word itself sets limitations.
1. a physical or mental condition that limits a person’s movements, senses, or activities.
2. a disadvantage or handicap, especially one imposed or recognized by the law.
The definition uses words like limits, disadvantage and handicap to describe disability. All these words are inherently negative in people’s mind. When you say someone has a limitation you are wondering why they can’t, instead of looking at what might be positive about them. How their “limitations” may have strengthened them and not weakened them. And if the negatives of disability weren’t enough to contend with, there’s also people’s assumptions about what it means to be disable.
Picture this: A young woman parks in a handicap parking space. She has her parking placard and is not doing anything illegal. She gets out of the car, a little slow and then heads to the front door of the store. She notices, on the way however, the angry looks from two older women who are returning to their vehicle. The young woman does not have a walking device such as a cane or walker, but she is disabled. She does her shopping and when she returns, there is a note on her windshield that reads:” Just because you are fat, doesn’t mean you need a disability placard.” She sits there for a moment and cries. Then she musters her resolve and puts the groceries away. This is not something that happened to me, but another woman I read about. But I have received my share of “looks” from those who don’t understand.
Sometimes disabilities are not visible. This means that someone who suffers from severe PTSD can request a disability placard because they need to get in and out of the store quickly. However, it brings in the perception and the definition of the word disability to the forefront again. People have it in their head what it means so anything that contradicts their perception is wrong. In a world with 53 million people struggling with disabilities, and where the disabled are still largely fighting to be recognized, you have a population within this community that goes largely ignored. Those with invisible illnesses. Here’s a few invisible illness/disabilities that you may not know: Visual or auditory disabilities who do not wear glasses or hearing aids. Sitting disability-caused by chronic back pain. Those with joint problems and chronic pain may not use mobility aids all the time, and this does not mean they are any less disabled.
I have to main thoughts on how the -abled community treats those of us with chronic illness and invisible disability. 1.) They de-legitimize the experience of the person going through it and 2.) They re-enforce the silence that accompanies invisible illness/disability by threatening consequences for behavior they find unacceptable and do not believe. Here are two examples to help you understand what I mean.
1.) Someone expresses a sitting disability and the individual reacts by scoffing and saying something like: “How can sitting not help you?” “You are far too young to have these issues, I think you just have to think positive. Mind over matter.” The universal eye-roll, followed by, “I think that you are just taking advantage of the situation and if you got up and moved around (lost some weight) you’d feel better. Leave disability for older people.” And many times, people also feel like you are lazy. You can see how it de-legitimizes what a person is going through and makes it seem like their illness is some dramatic exaggeration while also making it seem the person is lazy and simply doesn’t want to work.
2.) I have an un-defined seizure disorder. They come randomly and are embarrassing. I began to have a lot of them at my last place of employment, which was retail. I missed some days of work and had to leave early another. I was sat down with my manager and district manager and was told my job was in jeopardy because I was missing too much work. You can imagine the fear racing through me. I needed the job. I told them these missed days weren’t no-call-no-show and clearly, they saw me fall on the ground and have a seizure so it wasn’t like I was making it up. It didn’t matter. I was told that if I continued that I would not have a job. You can imagine my bewildered expression and the fear that came along with it. Here, you re-enforce the idea of not being open about your disability or illness for fear of some retaliation. This not only perpetuates the stigma of invisible illness but can have detrimental effects to those in the work force. Individuals who are requesting accommodations are being told that “they ‘don’t do that as a policy’ – even though these individuals are legally entitled to these accommodations.” [Joyce Smithey a lawyer who specializes in labor and employment] This can mean some people seek disability because they can’t work in an environment that doesn’t offer accommodations.
It really is difficult enough to have these challenges in our lives without having people out there doubt us and making us feel that the only way to protect ourselves and our job, is by lying. I hope some of what I have shared opens a door for positive discourse. Only through conversation can we end the stigma.