Defining Disability – Or Trying To Anyway
I tweeted about a new study that says there are as many people with disabilities worldwide as there are people in China. This brought up the question of “What is the definition of a person with a disability?”. This is such an interesting and difficult question to answer! At first glance, it’s easy to answer – there are plenty of definitions of disability. But digging around the question a bit more, finding a useful definition that makes everyone happy isn’t straightforward at all.
University thesis have been written on the topic. I don’t claim this post will cover everything, but it will give the reader a bit of an idea.
Generally Accepted Definition
I rather like the first definition I saw of "disability". This was the definition found in the Americans with Disabilities Act. Basically, the ADA’s definition says that you have a disability if you have a condition that significantly impairs one or more activity of daily living, such as walking, seeing, eating, hearing, etc. Similar definitions are found around the world, although wording varies.
It Gets Complicated
The question was asked: "does the definition include people with glasses?". Steven pointed out that the statistics in the study would probably be quite different if it did. Indeed they would. For the purpose of most studies, mitigating factors are not considered. For the purpose of census, they sometimes are, sometimes not, and sometimes both at the same time! Another issue is one of self-perception – some people get upset at the idea of being labeled "disabled". Then, as @kaupapa points out, there is the issue of medical model vs social models of disabilities to be considered.
Mitigating Factors
What are mitigating factors? Simple – anything that mitigates the disability. Someone may be legally blind without glasses, hence meeting the definition of disability because they have a condition that significantly impairs the "seeing" activity of daily living. But have very good vision if they wear glasses. The glasses are a mitigating factor. Similarly hearing aids are a mitigating factor for someone who has a hearing impairment. Antidepressant medication are also a mitigating factor for someone who has depression. A wheelchair is a mitigating factor as well.
This concept has been examined in some major employment discrimination court cases, notably SUTTON et al. v. UNITED AIR LINES, INC. Basically, someone was refused a job as a pilot with United because their vision was too poor. They sued United, claiming discrimination on the basis of their “disability”. They lost the suit because they could get 20/20 vision with glasses. While they were refused a job flying passenger pilots, they could get a job flying cargo, therefore they were not “substantially limited in the major life activity of working”. As a result of the lawsuit, the definition of who qualifies as an individual with a disability was narrowed quite a bit – in the context of law and discrimination.
I think the important aspect here is the ability to "fully" mitigate a condition. While both glasses and wheelchairs are considered mitigating factors, I don’t believe they should be considered on the same level. Glasses rectify the ability to see. Wheelchairs give mobility, but do not give the ability to walk. In that respect, I find it difficult to regard glasses and wheelchairs as "equal mitigating factors". But that gets even more complex when we consider that not everyone who has a vision impairment can fully mitigate it by wearing glasses. There’s also the fact that not everyone using wheelchairs are completely unable to walk. Where do you draw the line? You don’t, you can’t.
Self-Perception
There are many people who just don’t identify as having a disability. Many people who would meet the definition of disability (mitigated or not) just don’t perceive themselves as "disabled". I can understand that. The societal weight of wearing that label is quite heavy.
Census and Studies?
The percentage of people with disabilities has gone down according to many countries’ census. Used to be around the 21% mark. Now, it seems the average is around 17%. I don’t believe that there are less people with disabilities – I think it’s more of a reflection of how the "disability" questions are asked (or if they even are asked at all). Consider the following two questions:
- Do you have a disability?
- Do you have a condition that significantly affects activities of daily living?
Someone may not self-perceive as having a "disability", hence would answer no to question #1, but could very well identify with question #2. This impacts census data, as well as studies such as the one I originally quoted.
Disability vs Impairment
The issue of self-perception relates to a rather important difference in concepts: Is it a disability or is it an impairment? I find this distinction quite important, and it may help those people who do have a condition that affects their activities of daily living but don’t consider themselves disabled.
Such a condition is an impairment. In and of itself it doesn’t constitute a disability. An impairment becomes disabling when the person encounters barriers imposed by society. For instance, being unable to walk is an impairment. It becomes a disability only when there are no wheelchair accessible entrances in a building. Or being unable to see is an impairment. It becomes a disability when the only format made available is printed material. From that perspective, the ADA’s definition of a disability should really be called as a definition of an impairment, which can then be used to protect people from disability related discrimination. Did I mention things are complicated already?
Just like the concept of "disability" doesn’t work for everyone, the idea of "impairment" can trigger some hot reactions. Several friends of mine who are Deaf tell me that they are not hearing impaired. How could they have a hearing impairment, since they have no hearing at all. Something that doesn’t exist can’t be impaired, right?
This disability vs impairment "thing" derives in some ways from two major models of disability: medical model and social model. In the medical model, the disability/impairment is something to be erradicated, in the social model it’s just neutral. The following table highlights some major differences between the two models.
Comparing Social and Medical Models of Disability
| Medical Model | Social Model |
|---|---|
| Disability is abnormal. | Disability is different. |
| Having a disability is negative. | Having a disability is neutral. |
| Disability is found in the individual. | Disability is found in the interaction between the individual and a non-accessible society. |
| Cure or the individual’s normalisation is the way to fix the "problem" | Change to society is the way to fix the "problem". |
| The person who can fix the "problem" is the professional (doctor, social worker, etc). | The individual, an advocate, or anyone who affects the arrangements between the individual and society can fix the "problem" |
These are not the only two models of disabilities, by far. And there are new thoughts on the topic coming up. For instance, the concept of "functional diversity" is appealing because it promotes an inclusive view of the issues: everyone finds themselves on a single scale, rather than having an impairment or not.
How Useful Is The Disability Concept Anyway?
@kaupapa points out that
buying into medicalised definitions mostly misses the point
Indeed – the start of today’s discussion was thinking about "people with disabilities" when looking at tourism, and quantifying how large a market that segment of the population is. The idea is to *include* people with disabilities when developing tourism. kaupapa correctly pointed out that using medical model concepts automatically exclude – or rather creates a polarised view of the situation, which is not inclusive.
I don’t know the answer to this. I don’t think "society" is ready to effect changes without hard numbers. A business needs to know that catering to a certain market has the potential to increase revenue by X%. Getting those numbers can only be done when you define what you are counting. Unfortunately, being able to count things requires a binary view of things: either something is, or isn’t, meeting the criteria. The sliding scale of functional diversity appeals from a philosophical point of view, but appears totally impractical from a business’ need to quantify things.
What do you think is the answer? How can we provide the numbers business needs, while having a trully inclusive definition of this thing we often refer to as "disability"?