When is a difference a disability? (Part 3)

Signmark is a Finnish hip hop artist with a world-wide following.  That is unusual enough.  He is also the first deaf artist signed to a major recording label.  If you are wondering, "How in the world does that work?", check out the short documentary video below.  At the 11 minute mark in the documentary, the narrator asks,  "Is deafness a disability, or something else?"  Signmark replies,

"My only aid, really, is an interpreter. But interpreting is still language; it's not an aide per se. If you knew sign language, I wouldn't need an interpreter here, right? So, am I disabled, or just a linguistic minority?"

Clearly, Signmark does identify with the term disabled to some extent.  He has been designated by the Finnish government as a special representative for disabled people, and he been part of the working group for the United Nations Convention on the Rights of Persons with Disabilities (CRPD).  That document has a definition of disability which I find very interesting.  It states that:

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

It is the "in interaction with" part that really grabs me.  

It has only been in the last few years that I have come to appreciate the importance of external barriers to the concept of disability.  Prior to that, I had considered disability mostly through a medical model  that sees disability as a defective characteristic of the individual in need of fixing or therapy.  The United Nations definition, however, draws from a social model of disability, rather than a medical model.  In this model, disability is recognized as the consequence of the interaction of the individual with an environment that does not accommodate that individual’s differences.  

From Training Package on the Convention on the Rights of Persons with Disabilities
http://www.ohchr.org/EN/Issues/Disability/Pages/TrainingmaterialCRPDConvention_OptionalProtocol.aspx

The Convention on the Rights of Persons with Disabilities Training Guide provides a couple of illustrative examples of how this might play out:

• Being in a wheelchair (personal factor) combined with living in a city with accessible buildings (environmental factor) leads to participation in the community on the same terms as someone who is not in a wheelchair: there is little or no disability.
• Having an intellectual impairment (personal factor) combined with a belief in the community that persons with intellectual disabilities lack the capacity to vote (negative environmental factor) leads to exclusion from society and denial of the right to vote: there is a disability.

This perspective is particularly important within the education system because we are not a medical institution designed to diagnose and treat medical conditions. We are, however, a social institution, and we have a fair amount of control over the physical and social environment. We can identify barriers to full social participation and work to remove them. These disabling barriers might include the school facilities themselves, the attitudes of students or staff at the school, the rules and procedures for doing things (fire drills, assemblies, etc.), the classroom environment, or even the instructional methods, materials, and goals set out by the teacher.  

In the video below, David Rose of CAST  describes how curricula itself can be as disabled. This is also described in the document, What Does It Mean to Say that Curricula are Disabled? at the National Center on Universal Design for Learning website.

Signmark knows those barriers well.  He tells about the scorn he has received from hearing Finnish artists whom he says have resented his success. He also says that back in high school, when he expressed his desire to be an artist, all his teacher could say to him was,

"I understand you have dreams; I understand you have passion.  And I think that's great, but... you also need to understand and accept that you are deaf."

I would guess that his teacher had all the best intentions in giving him this counsel.  Sometimes it is hard to imagine how the barriers we face can be removed, and to believe that dreams and passion can be enough.  It must have been difficult to see how the education system could support him in achieving those dreams.  In fact, it is true that sometimes individual passion and dreams are not enough unless there are others working to support those dreams and help to remove or overcome barriers.

By this, I do not mean to diminish the determination and creativity that Signmark has displayed. He describes how the resistance he encountered has helped to strengthen his resolve, and this attitude was likely a critical factor in his success. The fact that he has been able to have a career and tour the world, however, is likely also due, at least in part, to the support and encouragement needed to overcome the barriers. In the video, for example, we see him working closely with his collaborator, Brandon, and we hear about the support he has received from the Finnish government and the United Nations.

In fact, if it is true that disability is one possible result of the interaction between personal and environmental factors, it is also true that successful development of ability is the other possible result.  As an educator, I may not have control over all the factors, but I need to be aware of those which I can control and to deliberately use them to help all of my students develop their abilities. 

In the end, Signmark's passion for hip hop, his desire to be an artist, and his determination to achieve his dreams are personal factors that have turned out to be every bit as important as his hearing impairment.  His career shows how a personal factor such as an impairment is not a disability in and of itself unless the environment is unable to accommodate that difference.  

So is it then the person or the environment that is "disabled"?

When is a difference a disability? (Part 2)

Definitions and labels are tricky things.  The word handicapped is rarely used any more because of the negative connotations associated with it.  At one time, however, it was considered a positive replacement for the words lame or crippled.  Now handicapped has largely been replaced by disabled.  This change was even reflected in legislation in the United States when the 1975 Education for All Handicapped Children Act (EAHCA)  was renamed the Individuals with Disabilities Education Act (IDEA) in 1990.  If you are under the impression that that term disabled has mostly positive connotations, however, watch the first few minutes of this TED Talk by Aimee Mullins:

One can see that there is a tendency for the terms which replace politically incorrect terms to become tainted by the connotations of the previous ones. Steven Pinker refers to this as "the Euphemism Treadmill." It shows up clearly in the progression of terms used for persons with physical handicaps, where terms like physically challenged, differently abled, and people with disabilities have been proposed to replace the term disabled.  A similar progression has occurred in the terms used to describe cognitive or developmental delays, with the terms idiot, imbecile, and moron being replaced by mentally retarded.  That term eventually also became pejorative and was replaced with others like mentally challenged, intellectual disability, learning difficulties, and special education.  If we take history to be our guide, it seems quite possible that these new, politically correct terms will also become the insults of tomorrow.  I know that I already hear the terms special and different often being used in a mocking tone.

I don't believe that it is just the negative associations of the words themselves, however, that lead to their replacement.  I agree with Aimee that the words themselves can have qualities that lead us to think and act a certain way.  As she explains:

"It's about what we believe about people when we name them with these words.  It's about the values behind the words, and how we construct those values."

I am sympathetic to the values and intentions behind the more recent terminology. I also understand that they also have their limitations.

There has been an attempt, with words like difficulties and challenged, to move away from emphasis on the absence of ability towards language which allows possibility.  That seems very promising to me.  Are these terms specific enough, however?  Do they sufficiently express the extent of the impact of more severe conditions on the lives of affected individuals?  Not all those who are affected agree.

I also can also appreciate the desire to use People-first Language, (i.e. people with disabilities) rather than use language that emphasizes the disability (i.e. disabled person).  I also know that this language has been criticized for separating the person's identity from their trait or condition (by using the word with in-between the person and the condition), implying that trait is somehow bad or lesser.  This doesn't sit well with those who wish to identify with their distinctive traits, such as those who identify with the Deaf culture and the Autism Rights Movement. Others criticize  the term as being awkward and thus drawing undue negative attention to the condition.

Either way, one can see that it is a challenge to find terms which adequately communicate the intended meaning without conveying unintended negative ones.

In both the terms people with disabilities and intellectual disabilities, you can also see that it has been hard to leave the term disability completely behind.  It has been carefully defined in law and in documents by various jurisdictions and organizations.   In the United States, for example, IDEA remains in force, having been updated and revised a couple of times, and the term disability has become all tied up with issues of funding and qualifications and requirements for programs and equipment. This is also true in many other countries.  It seems to me, then, that it has become less a decision of whether or not to use terms like disabled and disability, but when and how to use them sensitively and respectfully.

In the mean time, Aimee has come up with her own way of handling the issue.  She uses disable in its verb form, and she makes up her own improved thesaurus entry:

Disable, (verb). 

To crush a spirit, to withdraw hope, to deflate curiosity, to promote an inability to see beauty, to deprive of imagination. To make abject.
Ant. to make poss-able