|About the presenter: Grant Meredith is a lecturer in multimedia and games design within the Graduate School of Information Technology & Mathematical Sciences at the University of Ballarat, Ballarat, Victoria, Australia. He has achieved bachelor degrees in both Computing and IT and is currently working through PhD research looking at the experiences of stuttering students within the Australian higher education system. Grant is also an active and innovative developer and researcher within virtual worlds. Grant achieved the honour of being his university's Unijob's lecturer of the year for 2008 and 2009. Grant loves the challenge of lecturing despite being a person who stutters.|
DISABILITY. There I said the dreaded "D" word. That word that incites, fuels debates and divides opinions across social, cultural, religious and political borders.
Before I start this discussion let me relate a short story to you. About two years ago I presented a research poster at a major Australian disability conference. The poster outlined my fledgling PhD study looking into the experiences of students who stutter in Australian universities. My study looks at not only the social and class-based facets of university life but also the interactions that some students who stutter have with on-campus disability liaison officers, so I thought the topic fitted the conference theme and direction very closely. As the attendees made their way around the room housing the posters I became intrigued by the visual and verbal feedback that I was receiving about my study. Many attendees gave me the direct impression that they were confused about how stuttering fitted in with a disability conference. Some seem genuinely intrigued about how, why and if stuttering was a disability. Some other attendees gave my poster and myself some very strange looks of puzzlement and at times I interpreted some of these gazes as simple disbelief. Many of the people in attendance were clearly falling into one or more of the overt disability groups that we can probably all identify with, such as being visually impaired, deaf or mobility restricted in some fashion. Yet I felt distinctly that I was viewed as an outsider to them. I felt as though my study and I were not part of their "gang".
I started to think about why this was occurring. Was it because stuttering itself is not generally promoted widely as being a disability? Was the premise of the study jaded because there stood a man promoting the poster and study who on the surface did not look or act overtly generically disabled? Were people generally just plainly ignorant about the effects of stuttering upon the individual? Or in general did the attendees present not regard stuttering to be included under the term of disability? I surmised that perhaps the reason was a combination of all the reasons outlined above.
This led me to thinking even deeper on the issue. How, generally, do people who stutter regard themselves in terms of disability? The notion of disability is the cause of much debate generally, not just in stuttering circles because, as French (1994) puts it, "There is no simple way of defining disability, it can be viewed from many perspectives" (p.3). This notion of disability, and the consequences of stuttering being regarded as a disability, is the cause of great debate within stuttering circles around the world. If you take a look at any online stuttering forum (e.g. http://stutteringcommunity.com/index.php) or visit any support group of people who stutter, then you will see and hear the great divide over the notion of disability and stuttering amongst those directly affected. I struggle with this notion myself with my own stuttering yet I can see how I could easily fit practically any accepted definition of the word.
Definitions of disability differ slightly in language and meaning around the world from country to country, organisation to organisation, and individual to individual. To aid with this discussion the global definition used by the World Health Organisation (WHO) will be examined. The WHO defines disability as:
"...an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations (World Health Organisation, 2010)."
Under the WHO definition I can easily see myself as being disabled and in turn being impaired somewhat by my stuttering. My stuttering is a bodily function problem, it can at times impose limitations on my daily activities and it can at times restrict my involvement in life situations. Under the WHO classification of disability I am in fact disabled, or at least I can mentally adjust my own self-perception to fit the definition. The WHO definition is focused a lot on the notion of restriction and, let's face it, many stutterers let their stuttering restrict them from time to time. Under this umbrella definition of disability it is plain to see how most, if not all, of the human race at some point in their life could be labelled as being disabled. Yet looking at such a clear description of disability that is heavily life style-based one must ask why do so many of us who stutter refuse to wear the definition? Clearly we would not be alone in being annexed by the term. Perhaps our general lack of embracement is due to notions of perception and pride?
Let's now throw the WHO definition aside and think more generally about disability. What words do you think conjure up immediately in the general population's minds when they start to think about disability? For example, perhaps you may think that such words and phrases may include: illness; jobless; retarded; lacking intelligence; mute; wheelchair bound; deaf; depressed; mentally ill; uneducable; lacking limbs; friendless; a burden on society; no sex life etc. All these words and phrases have heavy negative connotations. They also all lend themselves to the general myths and misconceptions that exist about disability in general. Now be honest with yourself and list how many of those words and phrases and others like them you would have used to describe disability. I bet that quite a few of you may connect disability in some fashion to some of those listed misconceptions.
I propose that many of us who stutter reject labelling ourselves as being "disabled" on pure notions of pride and misguided perceptions. We do not want to see ourselves as being part of the community that fills all those negative misguided constructs of disability. We do not want to bear such a negative stigmata. We do not want to be seen as being different, abnormal or as any less of a human being. We want to be viewed as "normal" and included in mainstream society.
Many of us probably do not identify with the term for various reasons. Let's think about these. For most of us we appear to the general public to be completely "normal", everyday looking people and it is only when we speak to them that they can tell that we have trouble talking. It is only at the point of conversation that we expose ourselves and as a result maybe we perceive that our role in the conversation and perhaps even in society is a lesser in comparison to the people that we are speaking to. Perhaps we do not think that we fit the generic moulds of being generally disabled because we can generally hear, see and move around without much trouble. Also, in general most of us do not have any issues with intelligence or motor skills and so we may think, how can we be disabled? Well looking at the WHO definition it is fairly clear how we could be. If our stuttering restricts our daily functions and ability to socially participate then we in fact come under the WHO definition of disabled. Remember though that we are not alone and that by the WHO definition provided all of the humans walking the Earth today at some point during their lives due to many different circumstances would also be classed as being disabled. Under this clear definition people who stutter are in no way exclusive or special cases.
I am not trying to force the term upon anybody but I think it is important to understand how you and how everybody else who inhabits this Earth fits within the definition. Whether you choose to wear it or not is a personal choice. I have found though through my evolving PhD study that it can cause problems for some students who stutter throughout their journey to a university degree. Outlining my study in brief, I am looking into the experiences of students who stutter within the Australian Higher Education system. During 2009 I conducted a nation-wide survey of 102 past and present students who stutter and I personally interviewed 15. This has left me with a huge bank of numerical and narrative data. The results are currently being analysed but some fascinating trends are starting to emerge, some of which I will lightly cover in this discussion, within the context of disability.
When asked if they thought stuttering was a disability or not, the respondents were heavily against this idea, with many of them displaying a very firm disconnection from the term and sometimes to the point of sounding very politically incorrect, ignorant and angry. Some sounded genuinely offended that the question was even posed to them. I will now outline some of the negative trends that I have found in general and then compare the attitudes to the WHO definition. All the responses below were from people who believed that stuttering was not a disability.
"I may have some anxiety attached to it but I have all my limbs and brain matter!"
The WHO definition of disability does not allude to any specific function of impairment. It provides an umbrella definition that can be read to cover many different functional problems and does specifically target loss of limbs or any form of brain injury. We all know that anxiety itself can be very disabling.
"It sometimes creates obstacles for me during day to day living but I am in no way disabled."
The WHO definition relates directly to the individual encountering activity limitations due their impairment. Clearly if your stuttering is creating obstacles throughout your daily life then it can be classified as a disability.
"There are so many people far worse off than myself is so many ways."
The WHO definition look does not take a comparative view of disability. Degrees of impairment or restriction are not a factor. The impact upon the individual is the focal concern.
"...no, I think of disabilities as being non-recoverable."
The WHO definition in no way suggests that disability is not recoverable. Disability clearly for some people could be time framed and situational. For example you may be disabled during a six week period recovering from a broken leg or perhaps due to the variable nature of stuttering you are disabled at only specific times and situations in your life.
"...for people who have a severe stutter, I think it could be a disability"
The WHO definition mentions nothing about levels of severity. It is concerned with the difficulty experienced by the individual and does not in any shape or form force comparisons to others to be made.
"No. Speech is not impossible in any situation."
Some people who stutter may think that their stuttering is not a disability because of the constant variability of its occurence. Even if this is the case that fact that it is an impairment of bodily function and that it may restrict your life in same fashion due to times of infrequent occurrence still classes it as a disability.
"...when you see students with spina bifida or wheelchair-bound students, you feel you do not have the right to place yourself in that category."
The WHO definition gives you the right to term yourself as being disabled. If you are in any shape or form limited in life by your stuttering then you fall comfortably under the definition.
It is quite clear to see by examining just this small bank of opinions that in all cases they have the wrong impression of how disability is viewed officially globally and in the same way by many people. Perhaps these individuals wish to avoid the social stigma associated with being labelled as disabled and in turn avoid being associated with all the negative beliefs associated with an uneducated view? Perhaps these individuals have issues with self pride and do not want to lower their self-esteem to fit an uninformed self-belief of what disability really means? Having said all this I still believe that it is the individual's right to term themselves in relation to this definition. It is not wrong at all to believe that you are disabled or not. But I think you must understand that you can easily fit the description and that there is no shame in doing so.
In terms of my own PhD study this disconnection with the term disability seems to be a cause for concern. In Australia, like many other countries, stuttering is legally recognised as a disability. In Australia stuttering falls under the definition of disability provided by the national Australian Commonwealth Disability Discrimination Act (DDA) of 1992 and is openly supported by the Australian Human Rights Commission (Australian Human Rights Commission, 2010). It is unlawful in Australia to discriminate against an individual due to the fact that they stutter. The problem is that even with all these ethical and legal frameworks existing I am finding that very few Australian Higher Education students who stutter are registering with university disability liaison officers and in turn seeking assistance during their studies.
How can this be causing problems you may ask yourself? One problem is that because students who stutter are not registering with university-based disability service units then disability officers are not exposed informatively to the plight and problems that these students in general may encounter. It is immensely hard to formulate a common understanding within the profession about stuttering and how to offer assistance for it due to this lack of exposure problem.
Secondly, an Australian legal framework exists so that the university and all associated staff, including lecturers, are not allowed to discriminate on an individual based upon their disability and are required to make reasonable adjustments to aid them through their academic journey. Yet so few of my respondents asked disability services for assistance even though they admitted that their stuttering had impacted upon their grades and general academic performance. They appeared to be very bent against asking disability services for help, in a lot of cases because they did not think that they fitted or deserved the term "disability". It saddens me to think that so many students are hampering themselves throughout university and possibly beyond because of this non-identification with the word and students who stutter would be only a small minority of this larger group of hindered students.
I propose that you should take pride in the fact that at times you are disabled and may require some assistance and benefits. You are in no fashion alone in your choice to believe that your stuttering at some point(s) throughout your life may cause you to be disabled. You are in no fashion alone to believe that most, if not all, members of humanity at some points throughout their lives will be disabled due to some combination of impairment and circumstance. You are not a special case to be excluded under the definition. By taking pride and being open that you have at times a disability you will help to redefine the negative social stigmas that are commonly attached to that word. There is absolutely no shame at all with admitting that your stuttering at times may cause restrictions and limitations upon your day to day life and as a result could be termed as having a disabling effect on your life from time to time.
When the need arises say it loud and say it proud. I AM DISABLED.
Australian Human Rights Commission. (2010). Who is protected by the DDA? Retrieved 4th July, 2010, from http://www.hreoc.gov.au/disability_rights/faq/Who_is_protected_/who_is_protected_.html
French, S. (1994). What is disability? In S. French (Ed.), On Equal Terms: Working With Disabled People (4th ed., pp. 3): Elsevier Health Sciences.
World Health Organisation. (2010). Disabilities. Retrieved 12 July, 2010, from http://www.who.int/topics/disabilities/en/