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Beyond the Disabled Label

Beyond the Disabled Label

What’s in a label? You are either disabled or not, right?

In some cases, yes, but disability, like life, is not always so clear. Is disability simply a physical state-of-being or a state-of-mind… and does the label matter?

A quick glance at the dictionary tells us that disability means, “crippled; injured; incapacitated.” We see someone in a wheelchair and we automatically think “disabled.” The comments in a previous post about handicapped parking privileges indicate that we don’t all agree on what constitutes a disability beyond the wheelchair.

In the case of workplace rights or social security disability benefits, the disabled label carries great weight.

The Americans with Disabilities Act (ADA) considers you to be disabled “if you have a have a physical or mental impairment that substantially limits one or more major life activities.” You are covered under the ADA if you can perform the duties of your job with or without reasonable accommodation. If you can still work, it is important to become familiar with the ADA definition of disability in order to understand your rights on the job.

The Social Security Administration describes a person as being disabled if “you cannot do work that you did before; we decide that you cannot adjust to other work because of your medical condition(s); and your disability has lasted or is expected to last for at least one year or to result in death. This is a strict definition of disability.” This is crucial if you plan to apply for social security disability benefits, because it pays only for total disability, not partial or short-term disability. Sounds pretty clear cut.

In the case of relapsing/remitting multiple sclerosis, many of us live in an ever-changing reality, alternately able-bodied and disabled, defying a single label. Our disabilities, while severe enough to interfere with work and independence, are often invisible and may not qualify us for the disabled label in the case of ADA or social security disability benefits. We live in label limbo.

Beyond the legal reasons, the definition of a disability becomes more cloudy… and less important. How others label us and how we label ourselves is as individual as we are.

I’ve been told by some observers that I am disabled, but it’s not how I choose to describe myself. That’s because I still am fortunate enough to experience periods of remission from MS when physical restrictions of the disease are quite minor. At the same time, bouts of relapse that gain me admission back into the world of the disabled are never far from my thoughts.

Clearly, I have a disability, but it’s not so clear that I am disabled. I live in two worlds and claim residence in neither. The mind/body connection is a complicated one.

Is disability simply a physical state-of-being or a state-of-mind? Perhaps it is both; perhaps it is in the eye of the beholder; perhaps it is inconsequential beyond the legal ramifications. For now at least, I am content to remain unlabeled.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

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Ann Pietrangelo

Ann Pietrangelo is the author of No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis and Catch That Look: Living, Laughing & Loving Despite Triple-Negative Breast Cancer. She is a freelance writer and member of the American Society of Journalists and Authors. Follow on Twitter @AnnPietrangelo

73 comments

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6:17AM PDT on Oct 23, 2012

Again,enjoyed the wide array of comments.

6:38PM PDT on Jun 17, 2012

Thank-you

11:34PM PDT on Jun 17, 2011

Thanks,

4:22PM PST on Nov 28, 2010

As a person with a "hidden" disability, I cannot imagine wanting to use a handicapped parking space for my convenience, which is what this lady did. I would give everything I have to NOT be forced to use these spaces because of my disability. Under no circumstance would I use them if I did not have to do so although just looking at me physically, one might not realize my need for these spaces. My disability is that of a stroke, a cervical and lumbar disease which will eventually paralyze me if a cure is not found, and multiple Autoimmune Diseases, all of which make walking distances difficult. There are some days of which I must use a wheelchair for getting around. Other days, I am able to walk in a store without a wheelchair, cane, or any other device, but I am still in pain and walking is still difficult for me on those days. To see me then, one might not think that I did not need a handicapped parking place, but I do because of things they cannot see. This woman has NONE of these things. So many times, I have gone to my local store and had to leave because there was no parking close enough for me to be able to park in, go in the store and walk because I could not get my wheelchair out of the vehicle in a regular spot, and then get back in my vehicle. That lady being in the handicapped space for her "short" amount of time, might have made me have to turn around and go home because I drove around for a while and no handicapped space became available for me to use be

2:20AM PDT on Sep 14, 2010

spelling practice

2:20AM PDT on Sep 14, 2010

Over the past 20 years I worked for several disabiilty rights/information organizations. I also adopted 4 children, two of whom turned out to have significant disabilities, and 15 years ago I was diagnosed as having bi-polar II, a milder form of this condition, but difficult to medicate and the flare-ups are hell. Mental illness is often not obvious--but I need reasonable accommodations. I work for an ADA Information Center, so I get them. Call 1-800-949-4232 for free, confidential, information--no advocacy--about your rights under the Americans with Disabilities Act, technical assistance and LOTS of publications, which you can hand to your HR people about what they are REQUIRED to do if they have 15 or more employess. There are 10 of these centers; call 1-800-949-4232 to connect the center that serves your region; you'll be glad you did. And yes, mental illness is probably the last disabilty to be accepted and understood; families that are accepting and tolerant of family members with physical, learning or cognitive disabiiltes are still shamed by having someone with a mental illness (which is a disability) in their family. Next: regarding Social Security Benefits in the USA--in my 20 years of talking with the public (in charge of an 800 line for UCPA), I learned that it almost always takes 2 applications--and sometimes 3 or 4--before you are "found" to have a debilitating dis

9:50PM PDT on Sep 11, 2010

It has been over a year since the news about CCSVI & MS broke in November 2009. The Italian doctor, Paolo Zamboni, released his findings about a remarkable treatment for chronic cerebrospinal venous insufficiency (CCSVI) which has been reported to be found in 97% of MS patients.
Many countries have begun testing & treatment for this disease, ie Poland, Bulgaria, Mexico, Costa Rica, India, Kuwait, Australia and some places in the US. There maybe others I have forgotten and I apologize.
What is wrong with Canada & the majority of the US? I ask people to think as if they were the ones living with this disease with no cure, worsening each day & there is a treatment that has research all over the world and has showen improvements for the majority, what would you expect from your medical community and govn't? Would you stand by getting worse and possibly dying while 'they do more research'? Or, would you ask them to fund trials & keep a registry of people who go to other countries for the simple procedure?
Oh did I mention that the govn't wasted billions of dollars hosting the G6 & G20 summit? Total mismanagement of funds...
Don't just take my word for it and do some research. We need to start thinking for ourselves and stop trusting that the govn't & medical professionals are always looking out for our best interest.

7:12AM PDT on Sep 2, 2010

Thanx for a great article!

1:47PM PDT on Jun 29, 2010

I am also long-winded! With other people, if they asked, I would have just said, "I have a disability." None of their business what kind, is it? If they glared, I would have asked, "Is something wrong?" But only if I were in the right mood. Otherwise, I would have just ignored them.

1:44PM PDT on Jun 29, 2010

Well, we have made it clear that not all disabilities are obvious--and some are obvious some days and not on others. Because my disability (bi-polar) is not obvious, I don't disclose it freely. I told my boss about it because I needed "reasonable accommodations"--being allowed to work from home on days when my anxiety was very bad, a quiet office area (in my case, an office with a door that I could close). My job as a writer and editor made it easy for them to agree so under the ADA they gave me reasonable accommodations that allowed me to continue to work for them. Other jobs can't always be that flexible--but we have the right to ask for accommodations--some equipment, a change in schedule, etc.--that allow us to do the most important parts of our job. And our bosses have to consider it and discuss it with us. ADA Information: 1-800-949-4232--free, accurate and confidential--for your bosses and you both.

I also disclose, with care, because having a mental illness is still considered "very dangerous" and "scarey" and I want people to know that it is just a disability like any other.

As for not using a scooter, when I broke my ankle, I used one--big cast. But I kept on using one for a couple weeks after because I needed to! And yes, people looked at me funny (I am a terrible scooter driver!) but I did it anyway! If the managers had asked me, I would have told them I had a broken ankle and it was not quite healed. Other people I would just have said, "I have a

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