Am I Disabled?

I am disabled as a result of multiple sclerosis. Not everyone with MS is automatically disabled. How do people decide if they are or are not? What is disability anyway?

On December 2, International Day of Disabled Persons, I wrote on Down the MS Path that "This is our day." Merelyme wrote a comment --

"I was unaware of this day. Reading the word...'disabled'...I am trying to reconcile it with my life. I have a son with autism, and he would be considered to have a 'disability.' Now I have MS but am I truly a part of this group? When is MS considered a disability? I am still coming to terms with my diagnosis and that word, in particular, freaks me out the most. I bet you could write a good post on this topic."

Well, Merelyme, it freaked me out, too.

The day I received my handicapped license plates, I cried. I was swamped with a dichotomy of feelings. Suddenly I was "officially part of this group," and I felt sad, angry, cheated out of the rest of my life. But I was in an elite group that could, among other things, park close to building entrances. I knew I was truly disabled, but it wasn't until the plates arrived that I actually grasped it.  It took awhile for me to be comfortable saying "I am disabled."

When is MS - or any other potentially debilitating condition - considered a disability? What exactly is disability?

The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities tells us disabilities are “characteristics of the body, mind, or senses that, to a greater or lesser extent, affect a person’s ability to engage in some or all aspects of day-to-day life.” We are reminded in the 1997 report that disability does not mean inability, nor does it mean illness, although it can result from illness.

The Center on Human Policy, Law, and Disability Studies at Syracuse University defines disabilities in a social, cultural, and political context rather than clinical, medical, or therapeutic. That is, rather than a functional characteristic, it is a disability when society considers it so. “Disabled” is a “socially constructed definition” applied by the “majority which is presumed to be nondisabled.”

Social Security has two major federal programs that provide income, so they are concerned with a narrow definition of disabilities focused on your ability to earn your own income. For supplemental income (SSI) initial screening, they ask the question "Are you disabled?" with no criteria or definition - you decide. I assume they request details when you actually apply.

Then there is disability insurance (SSDI). The question for SSDI is not "Are you disabled?", but "Are you disabled enough?" The main criterion is whether your condition prevents you from doing your past work or adjusting to other work. They use five questions to determine if your disability qualifies under the Social Security definition. Here's a hint: If you are working and making more than $940 a month, you are not generally considered disabled.

If you get through the first two questions, they offer a list of medical conditions severe enough to qualify you automatically. If you are not on the list, you still have two questions left, focusing on whether you can work. Even with this limited perspective, they say people have a 3-in-10 chance of becoming disabled before retirement.

Youth Information in the UK says disability is an impairment resulting in the inability to carry out normal social roles.

Then there's the Americans with Disabilities Act (ADA) which defines the term "disability" in Section 3.2:
(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment.

There are many more definitions available on the Internet and personal opinions everywhere, but I think this covers the gamut, or at least it's a good start. With these definitions, we see duplications and contradictions, but no clear single definition. I like the idea that the disability community is not sick, does not lack ability, that we are diverse, "differently abled" and differently responsive. I like the idea that disability is simply attitudinal and more cultural or social than medical.

So, Merelyme, this is disability. You can be an official member of the group if you want to be. Right now you are lucky enough to have the choice.  If you need help, and everyone does one time or another regardless of ability or disability, it is available to you. If you are confronted with a barrier to employment, transportation, accommodations, services or telecommunications, there are steps available to break down that barrier.

Are you disabled? Take your time and be comfortable as you reconcile yourself.

Other sources with good definitions of disability:
The Center for an Accessible Society
CRS Report for Congress