When is a difference a disability? (Part 4)

According to the Huffington Post, there was one particular performance that really stood out during Comedy Central's Night Of Too Many Stars in October 2012. That performance was a duet between Katy Perry and a young girl named Jodi DiPiazza:

HuffPo reported that the performance left the MC, Jon Stewart, overcome with emotion, and that the most of the audience seemed to share this sentiment. Judging by the number of times that the video has been viewed on YouTube and by the comments posted below, I assume that a great many other people feel the same way. 

All of this reaction occurred despite the fact that Perry gives a restrained and pitchy performance (she was not singing in her usual key in order to match up with Jodi), and Jodi's performance is considerably less polished than one might see from any number of youth performers on shows like America's Got Talent. So what's the big deal?

From the YouTube comments, it seems that many people are inspired by Jodi's performance because she is autistic and has had to overcome many challenges in order to learn the musical and social skills necessary to pull it off. The Night Of Too Many Stars event was, in fact, a fundraiser for autism programs, and Stewart introduces the segment by explaining:

"We've told you why people with autism shouldn't be written off - why they deserve, like everyone, the chance to reach their potential.  That's why we're here tonight; that's why we're doing this.  So let's take a look at what happens when someone actually gets that chance."

But some might find that a bit condescending; "Hey, look at the disabled kid sing with Katy Perry; isn't that cute." One YouTube commentator, jenreyn905, expressed the opinion that,

"Only showing videos of Jodi's tantrums, dramatic music, and everyone's intense sympathy in the beginning video in no way shows that "people with Autism should be treated like everyone else." They should, but I'm sure there is much more to this girl than playing the piano and showing home videos of her screaming in front of thousands/millions of people. It's wrong"

This was definitely a minority opinion, but isn't there some truth in it?  How should we respond to portrayals of individuals with diagnosed conditions or impairments who overcome great challenges?

In this series of posts on difference and disability, I have shared videos featuring rock and roll drummer Dean Zimmer who has arthrogryposis, athlete/fashion model/public speaker Aimee Mullins who is a double amputee, and hip hop artist Signmark who is deaf. I came across each of these videos on social media where they have been shared and viewed numerous times, and I personally found them quite interesting.

I will admit, however, that I have been nervous about sharing these videos and making them the center of this series because of their potential to reinforce unhelpful stereotypes. Persons with disabilities have often been portrayed in the media as either heroic ( i.e. the "SuperCrip" model) or as objects of pity.  The videos I have shared have tended more toward the heroic portrayals, as do most that I see online these days.  In fact, it seems to be the element of heroism that makes them so appealing.

"And what is the matter with that, anyway?" some might ask. The United Nations Convention on the Rights of Persons with Disabilities Training Guide explains the answer quite simply:

"Do not assume or act as if persons with disabilities are heroic or courageous just by virtue of having a disability. This emphasizes difference. Persons with disabilities have strengths and weaknesses just as persons without disabilities." 

In the end, I decided to share these videos not just because I knew that they would catch people's attention, but also because of the opportunity they provide to examine our assumptions about disability.  I assert that one of the main assumptions that needs to be questioned is that "when persons with disability overcome adversity to do something "normal," they are being heroic". That kind of thinking reinforces the primacy of normalcy and further stigmatizes difference. What about those whose level of impairment is such that it can not be overcome and who would not be able to perform these tasks. Are they less heroic; less in need of recognition; less valuable? What about those who excel at things that differ from the norm?  Do we value their talents and accomplishments too?

None of this is to say that the accomplishments of Jodi DiPiazza, Signmark, Aimee Mullins, and Dean Zimmer are unworthy of recognition or appreciation. But we need to critically examine what it is about those accomplishments that we appreciate and why we are drawn to them. How can they challenge us to think differently instead of just reinforcing our biases about disability and normalcy? When we celebrate their overcoming of adversity, do we think of it mostly in terms of overcoming their differences to act more "normal "? Or do we recognize the adversity found in the prejudices of others and the difficulties in accessing necessary services and environments? 

And is it just the overcoming of this adversity that is worth celebrating, or can we not also celebrate the character exemplified by the day-to-day grappling with adversity that so many people with disabilities face.  Can we, perhaps, even appreciate the value of diversity itself and accept that some degree of adversity necessarily comes with it? In her TedTalk video, Aimee Mullins argues persuasively that:

"Adversity isn't an obstacle that we need to get around in order to resume living our life. It's part of our life."

For me, the beauty of the Katy Perry /Jodi DiPiazza performance was not that Jodi seemed "more normal" than in the clips from her childhood, but rather that she seemed so confident in her abilities and comfortable with herself, even though she was performing with one of her musical heroes in front of a huge audience.  I am not sure I could do that!  It was also the fact that she had been able to access the services she required to do what she needs to do in life and to develop her own talents and pursue her own interests.  Her father sums it up best in his admission that,

"As her education continues, I've taken off the idea that there's some limit on her because she, you know, continuously proves that that's not true."

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

When is a difference a disability? (Part 1)

Dean Zimmer may not be a household name, but he is a great rock and roll drummer.  His drumming style is tight, passionate and musical, and apparently his band has opened for Foghat, Eddie Money, Paul Rogers, Styx, Kansas and Thin Lizzy.  He also has a physical condition that some would call a disability.  Watch him play in this 6-minute documentary, "Drummer Wanted," and see whether or not you would classify him as person with a disability:

 

"He is not handicapped - he is different," 

says his bandmate Rick Abbott.  Dean certainly is different from most drummers.  He holds the sticks differently and has them strapped to his arms.  He moves his body a lot more while playing, rather than just moving his arms and legs.  According to Rick, Dean's limitations contribute to his unique sound.  But is his condition a handicap?  According to the Oxford Dictionaries website definition,

a handicap is "a condition that markedly restricts a person’s ability to function physically, mentally, or socially."  

Is Dean's functioning markedly restricted?  It sure doesn't stop him from playing the drums!  Yes, Dean uses a wheelchair to get around much of the time.  According to The Los Angeles Times, he has a rare congenital disorder called arthrogryposis that makes it difficult to move his joints.  In the video, however, we see Dean driving, climbing, moving around and setting up his drum kit.  Rick claims that Dean can do anything anyone else can do, although it sometimes takes him longer.  I must admit that I had some difficulty understanding some of what Dean was saying at first, but I was able to understand him pretty well on second listen.

Does any of that meet the definition of handicapped?