Is Stuttering a Disability?: Speech at the International Fluency Association World Congress
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About the presenter: Anita Scharis Blom was born and raised in the Netherlands, but is now married and living in Sweden. She works as a secretary and as the IT support/teacher assistant in school. Besides that, she is a board member of the local chapter (SSF), chairperson of the Swedish stuttering association (SSR), vice chair of the European League of Stuttering Associations (ELSA) and a member of the advicory board for the International Stuttering Association (ISA). She states, "I have stuttered since I was 9 and had a troublesome youth, but this helped me to now work with and give advice to people who stutter of all ages and help them to break down their barriers and show them the world is at their feet." |
Is Stuttering a Disability?: Speech at the International Fluency Association World Congress, Dublin, July 2006
by Anita Blom
from Sweden
My name is Anita Blom, I'm the chair of the Swedish Stuttering Association, SSR, vice Chair of the European League of Stuttering Associations, ELSA, and a member of the Advisory Committee of the International Stuttering Association, ISA.
While I'm giving this presentation I may not stutter that much. At least my stuttering doesn't disable me. I even may not stutter at all at this moment (thanks to this microphone). But when I'm on the phone and have a block and the other person fills in my words, ridicules me or hangs up the phone, my stuttering has disabled me from communicating. When I am singing in my car, there's no sign of disability. But when my friend is driving the car her stuttering blocks make her close her eyes while driving. Her stuttering is definitely a problem, for her, for me and for other traficants. When I am speaking with my colleagues, my stuttering is not a problem. But when I am at a job interview, my stuttering disables me from selling myself in a way that justifies my abilities.
Is stuttering a disability? In some countries it is, in many countries it isn't. For you maybe isn't, for me maybe it is. Today it doesn't have to be, tomorrow, or maybe already in half an hour, it could be. For stuttering is some kind of an unpredictable malfunction. (Now I'm not an expert on the physical or psychological side, but somewhere something is stopping me from speaking fluently.) But stuttering becomes a disability, or handicap, as soon as it stops me from leading a satisfactory life. And what a satisfactory life means to me may be very different from what it means to you! It may be getting your dream job, reading bedtime stories to your children, it may also mean finishing your sentences by yourself, no matter how long time it may take.
Compare a stuttering organisation, no matter on what level, with an organisation for the deaf. Look at funding, the diversity of technical aids, political attention, people's reaction to wearing a hearing aid and deafness as such, special schools etc etc. Now look at stuttering - and the lack of all these things. Now why is that?
If we want the same acknowledgement and help as the deaf people, we might try to put our pride aside. We are 1% of the population who stutter and would make an impressive voice together, but how many of us speak up? How can we make decision makers understand we need help when they still think stuttering is not a problem. ("Everyone stutters every now and then"). Well, some of us do need help even if some of us don't! Some of us do get bullied, some are totally socially excluded, some of us simply give up on life. If we want to get our soft and stuttering voice heard, we MUST unite with those who already have a loud voice. With those who are many. With those who already are a natural part of our society and on the political agenda.
For why should we get technical aids and therapy when we tell decision makers stuttering is not a disability (read: a problem)? Why should children in schools get special help and treatment when stuttering is not a disability? How can we even claim to get the same respect as people with other disabilities when WE ourselves claim we don't belong to that group?
The 22th of October is the International Stuttering Awareness Day, ISAD with an online conference from the 1st until the 22nd of October, available through the Stutteringhomepage www.stutteringhomepage.com, hosted by the eloquent Judith Kuster. This year's ISAD theme is "Don't talk ABOUT us, talk WITH us". This is a message to those around us, to make the subject discussable, just like other well-known disabilities. A message to therapists as well as researchers to see the whole person, not just go by the book or scientific results, but to get their knowledge from us individually as well, as we all have our backpacks with knowledge and experiences which makes every one of us unique, and to join our meetings and get to know us as persons leading our daily lives and not just as patients in the clinic. Last but not least a message to us who stutter to talk about stuttering. For if we don't talk about it, how can we claim people should understand, treat us the right way and help us to make life easier? How can we get rid of all myths if we don't tell them the true story? How can we get help if we don't tell them how??? As Dr Phil Mc Graw states so often: "you can't change what you don't acknowledge."
I might no longer feel stuttering is a disability for me, but when I see that girl in the car closing her eyes when she speaks while driving, I wish social security would provide her with a free DAF device. When I see that child being bullied by his school mates and ignored by his teachers, I wish stuttering would be an obligatorily part of a teacher's education. When I hear that people who stutter are being banned from their villages, cannot get married and have to eat grasshoppers to "cure" stuttering, I wish there would be more money to stuttering research and projects to change the public opinion.
I myself studied for two years with money only people with disabilities could get, thanks to the fact that I checked the box asking if I have a disability or not. I couldn't afford the 1400 Euro I needed to enjoy the whole congress, but thanks to my sponsors who know me and acknowledge the importance of raising awareness about our disability, I at least can attend this congress. ELSA gets money for projects because we have aligned us with the disability sector and the European Disability Forum for 10 years, even before the issue of is stuttering a disability became a hot topic, which makes ELSA leaders in the field!!
The ELSA youth meetings' main goal is to encourage young people to talk and stand up for themselves. In 7 days we unite young people from all over Europe and discuss items such as disabilities and how we can change people's perspectives. Together they put their thoughts and demands into words and action and many of them become active within their national stuttering associations, daily lives and maybe even politically. One of them is even a major!
But even the disability movement still has a problem acknowledging us, but when we ask for the microphone and show them what stuttering really is about, either by giving them some everlasting blocks or by explaining about the daily problems we face, we always get the same reply: "I didn't know that!".
So, is stuttering a disability? Maybe not for you and me, but don't let our pride stop us from helping those for whom stuttering is stopping them from having a life they wish for.
Thank you.
Anita S. Blom
August 21, 2006
