Wednesday, July 01, 2009

Quantum disabled

A reader is having a titanic battle with the BSA (British Stammering Association) heavyweights on whether the BSA should press for stuttering to be recognized as a disability. Here is some food for thought.

First of all, we must avoid the false dichotomy fallacy: either you are this or you are that. Disabilities come in different forms and shapes, and must importantly they continuously vary from no-one to complete. You can be 100% deaf or you can be 5% deaf. You might hear well but only a certain frequency range. You might be able to hear but not analyse sounds. So you might say that deafness is a disability IN GENERAL, and to various degrees for different people. The same with stuttering. If you just stutter slightly, your disability is minimal at best, maybe more of a handicap, a nuisance, or just a part of your speech pattern. But for a severe stutterer struggling to get out words for seconds, it must certainly be a disability for he or she cannot communicate properly and they need assistance by society if requested.

Now, we could have the case where someone stutters slightly but this slight stutter has a significant impact on life quality. Here it is not clear to me that he is disabled. He is just marginally disabled and his psychological set-up will make him as if he is significantly disabled. So the physical difficulty to produce fluent speech is critical for the extent of disability, in my opinion. This must be true because take the example of a scar in your face. For some people a big big issue, but that person is not disabled as such, but has a psychological set-up that blows the issue up.

This distinction leads me to the fluctuation in stuttering. We always look and often behave normally. Sometimes we are fluent, sometimes more fluent, and sometimes we are not. Or some very mild stutterers sometimes have severe blocks. So it feels a bit like we have a quantum leg. A disabled person might lack a leg, but we lack a leg sometimes and sometimes not! So when we have physical difficulty to speak we are disabled when we have none we are not.

Another issue is to distinguish between what I believe and how others see me. The girl at the bakery must consider me disabled as I always struggle to talk to her. People who have just heard me on a fluent day might consider me not disabled. And people who know me might consider me not disabled as such but probably with a clear handicap and are happy not to have such a handicap. Even if you think you are not disabled, others might consider you disabled and treat you accordingly!

Another aspect is the impact of the label. Yes some people or children who stutter might feel worse of when they are considered as disabled. And having the attitude of being disabled can prevent you from seeking out the best opportunities. But the doctor has to weight someone, she cannot write down a feel-good weight but the real one.

So how do I consider myself? I clearly feel disabled at times when I cannot say what I want to say and when people treat me differently. But at times I just don't feel this when I am pretty fluent or when I might stumble but I can say what I want to say. So I am quantum disabled.

(Please note that the use of quantum is a joke. I do not want anyone to take it up! :-)


Manuel said...

somehow i think we all "stutter" the same way, the only difference is how we try to avoid it. If you switch the word you are fluent, if you are distracted or the situation changes suddenly you are fluent. But what if we would aproach the "block" and really do nothing against it and just speak that word/sentence out? I think we all would have the exact same problem: not be able to speak it out. And thats a clear and very serious disability for me.

"Severe stutterers" probably associate more words and situations with stuttering and have more blocks, but beside the amount its allways the same thing.
Or not ? I don't think there are light blocks and severe blocks.

Leys Geddes said...

There are a lot of different views on whether stammering is a disability. In the UK, depending on the severity of the stammer, and what the speaker is trying to do, it can be - and has been - classified as a disability in law. So I would argue that stammering can be a disability, but I would not say that we are disabled people - not least because 'disabled' has almost come to mean somebody in a wheelchair.

Last week, I was representing the BSA at the Speaker's Conference, which is a Parliamentary committee looking into the under-representation of women, ethnic minorities and people with disabilities in the House of Commons.

Giving evidence to the Conference, I was sitting alongside a blind man from the RNIB (charity for blind people), a man from the RNID (deaf and hard of hearing charity) and someone in a wheelchair (mobility disability charity). I would never have imagined a few years ago that I would be teamed up with them. But then, of course, they all spoke absolutely fluently and, when it came to talking politics, it was me who had the obvious disability.


Tom Weidig said...

>> "Severe stutterers" probably associate more words and situations with stuttering and have more blocks, but beside the amount its allways the same thing.
Or not ? I don't think there are light blocks and severe blocks.

No, some people have very clearly more neurological issues than others. You might be right to some degrees as I also said in my post: some suffer a lot with mild stuttering. But in general the more underlying issues the more severe.


Leys Geddes said...

Tom, you say that there is a discussion going on about whether 'the BSA should press for stuttering to be recognized as a disability'. There is no need for us to do that, because the law has already done so. People who stammer, who believe they have been treated unfairly, can always refer to the Disability Discrimination Act in order to see if it will help their case.

In the US, I don't believe that either the ADA or the SSA covers stuttering. But what is the situation in other countries?

What the BSA did do, however, was to accept an invitation to attend a Parliamentary committee, the Speaker's Conference, which is looking into why women, ethnic minorities and people with disabilities are under-represented in our House of Commmons. Applying the 1% rule, there should be 6 or 7 Members of Parliament who stammer, but as far as we were aware, none did. So, as it would be a good thing to have MPs who stammer and are in the public eye, but who get on with the job nonetheless, we went along to see what might be done. As a result of this, we had the opportunity to speak about stammering to the 12 MPs on the Committee and to make the point that the political parties seem reluctant to accept people who stammer as candidates. This was a surely a good thing to do, because it should create more awareness of stammering, help dispel some myths about us being weak, indecisive, etc., and make it a little bit easier for stammerers to become MPs.

The organisers of the Conference chose to speak to the BSA at the same time as they spoke to charities representing the deaf, blind and mobility disabled. And, like I have said, it was strange to be sitting there alongside these people. But, when it comes to politics, which is very much about talking, they, of course, are entirely fluent.

Coincidentally, they are discussing disability right now on Stuttering Chat, and an Irsh guy called Richard Keane, who stammers, made the point that he had been reluctant to join the Disabled Students Society at his university because he did not want to be regarded as disabled and had considered himself to be normal and thus, implicitly, superior to the others. It's worth dwelling on that last point for a minute or two.

Finally, if you want to see the benefit of having Members of Parliament who stammer audibly and visibly, yet still get on positively with life, may I recommend to you the most excellent Proinseas De Rossa, the Irish politician:

Now, do you see why it is worth taking every opportunity we can to encourage, and make it easier, for people who stammer to progress in politics, and in public life generally?


ac said...

You like the girl at the bakery, huh? For your next speech assignment, you must find out what kind of movies she likes.

Anonymous said...

Fighting to have stuttering officially listed as a disability is a negative approach. How about something a little more positive? Why not promote the ways in which various stutterers cope with their stutters? A lot of people have quite severe stutters, yet they live very happy fulfilling lives, and they each have a story to tell ... and we can all learn from each other.

Leys Geddes said...

Anon, I will reply to your comment here, but I think you are not reading what I am writing. So, unfortunately, in a place where conversation should stimulate, there does not seem to be much point in me replying again and again to you writing the same thing again and again. So, I repeat, the BSA is not fighting to have stammering listed officially as a disability. Read my blogs again and you will see that.

In the US, however, some people want stuttering to be included in the new ADA, along with the disabilities that are now listed there. Others in the US would prefer something like our DDA, precisely because it does not force people to be described as disabled. Based on our experience here in the UK, I think that such an act would do more, for example, to help young people in the US who stutter to find a job than a blanket categorisation of all stutterers as disabled people. Maybe, if you had not obtained your independence all those years ago, you would have this far-sighted piece of legislation on your statute books!

We can indeed learn a great deal from each other about how to live happily and successful lives despite our stammering. The danger of this, however, is that if we spend too much time talking to ourselves (see )we will not really change things. If we want change, as I do, we need to talk much more to the 99% of people who don't stammer. So, strange though it was for me to be seated at a Parliamentary Committee with a blind, a deaf and a wheelchaired person, I am certain that this was the right thing to do because it will, in some very small way, make it easier for people who stammer to become Members of Parliament and, thus, to demonstrate to stammerers and non-stammerers that we are perfectly capable of doing that kind of job.

But politics is just one of the many public fora in which we stammerers need to be seen more often. As we said in our original submission to that Parliamentary Committee: "No Member of Parliament stammers audibly. No high-profile leader in business or any other career stammers audibly. Stammering hardly ever features in the broadcast media unless as a dramatic device - and usually for comic intent, or to denote psychotic tendencies. So, as a result, people who stammer have virtually no public voice, literally."

Giving stammering a more public voice is just one of the many very useful things we do at the BSA, despite the limited funds available to us. We are a positive organisation, in which many positive people are doing very positive things. To say otherwise is to insult us.

Anonymous said...


I wasn't responding to your particular post. In fact, I hadn't even read it. I was merely addressing the whole concept of stuttering as a disability. Instead of promoting stuttering as a disability, a more positive approach is to show young stutterers (and older ones) how people with severe stutters can and do live well in society. It is not a disability unless you think it is. But I'll respond to your post now:

You said:
"The danger of this, however, is that if we spend too much time talking to ourselves"

I think you misunderstood my point. Once a stutterer realises that he can pursue a normal life, he will interact more confidently with society. There are stutterers who join support groups and, from what I've seen, most of them do not stay very long (or their attendance becomes much less regular). Once they gain confidence, they would much prefer to join the "real world". I only attended a support group for a few months, and found it to be an artificial environment. The only thing I had in common with the others in the group was my stutter (although they are very nice people). I'm an average person who just happens to stutter, but I don't want to make stuttering the central part of my life. How do we get stutterers to "come out of the closet"? Certainly not by encouraging a link between stuttering and disability!

You suggest having a greater representation of stutterers in politics ... but that's hardly going to make any difference. Stutterers make up only 1% of the population, and the severe ones are even rarer, so one would not expect to see a battalion of severe stutterers sitting in parliament (although that would be fun). And even if there were a lot of stutterers in parliament (or even 1 stutterer), chances are that they would not be very severe stutterers (that Irish chap is actually quite fluent). By the way, a lot of different types of people are not well represented in politics - dwarfs, morbidly obese people, blind people, paraplegics, people with Tourrettes ... etc. I have no interest in politics, but if I were interested, I would make the necessary steps to achieve my goal. I may not be successful (and lots of non-stutterers are not successful either), but I'd try. I would think that any person - stutterer or non-stutterer - with a passion for politics would strive for that goal, without any need for the BSA. To be successful in politics, one needs to have a very thick-skinned personality.

You want to make stutterers more visible. Why? Personally I don't want to be visible because I stutter. It's not that I'm ashamed of my stutter - it's because stuttering is only a part of my life. I am a spouse, a worker, a fitness coach, a writer, a student, a traveller ... and more. I just happen to speak differently.

So how can we get those covert stutterers to come out of the closet? As I said, one way is to promote those stutterers who are living happy and fulfilling lives. If the BSA wants to do that, they can post stories or mini biographies on their website, and/or have a monthly newsletter with such stories.

I think you and I might have some ideological differences of opinion, and that's okay. Not everybody sees things in the same way. We can express our opinions politely, without resorting to that asinine Norbert-style rudeness. The thing that really irritates me is when people try to associate stuttering with disability.

Leys Geddes said...

OK, Anon, I think we might be getting somewhere now.

You said 'Once a stutterer realises that he can pursue a normal life, he will interact more confidently with society.' I completely agree with that. You, like me and many others I'm sure, have probably done so despite the frustrations, the prejudices and general need to try harder! The key point, however, is that a stammerer will only do this ONCE he realises he can and, I would add, once non-stammerers give him the impression that he can.

Speaking at that Parliamentary Committee, putting up videos, encouraging stammerers to speak at Rotary clubs and a whole list of other things are ways of encouraging stammerers and non-stammerers to see that we can pursue 'a normal life' - which includes expressing ourselves and joining in public debates. Coming out of the closet is a phrase I have also used.

But, whilst I entirely respect your dislike of an association between stammering and disability, I get cross again when you accuse the BSA of trying to do this. That Parliamentary Committee was looking into the under-representation in Parliament of various groups in society. There should be 6 or 7 Members of Parliament who stammer, but none appears to do so. So we are under-represented. The main reason we are under-represented appears to be that the stammerers in local politics feel they are not likely to get selected as a prospective MP by the major political parties because of their stammering. This is another example of the prejudice we all recognise and, therefore, it should be fought on principle.

If there were 6 or 7 MPs who stammered visibly and audibly, I can tell you with absolute certainty that it would change the perceptions of, and thus the opportunities for, everyone else in the UK who stammers.

For some years now the BSA has been featuring stammerers who are living happy and fulfilling lives. We post them on our website and we write about them in our magazine, Speaking Out. So, once again, I must ask you to take a look before you give us your proposals on what we should be doing.

But, Anon, to get back to the point I made before, whilst these articles are helping stammerers to see that they can live a good, positive life despite their stammering, these stories will never be featured in those media which are being watched, listened to and read by the 99% of the people in the world who do not stammer.

If we really want to change things, we need to be seen and heard to be stammering in the Outside World. This is the only way we can improve the perception of stammerers, improve stammerers self-perceptions, create a better understanding of stammering and reduce prejudice.


Anonymous said...


It's good to hear that you don't believe that stuttering should be considered a disability.

For the reasons I mentioned in my previous post, I don't think there will ever be a lot of *severe* stutterers in parliament, and I don't really see the need to push the issue.

About the case studies on the BSA website: I had visited the website in recent days, and did not see any sign of them. It's only when you told me their location on the site that I managed to find something today. Every person with a stutter, no matter his/her status in society, has a story to tell, and it would be interesting for people to read about their journeys through life and their feelings. I'm not suggesting that these articles should be aimed at the general public ... they should be aimed at stutterers, so that they can see that stuttering should not restrict them in their lives. I think that's more effective than having Leys Geddes pushing for more stutterers in parliament.

You wrote:
"If we really want to change things, we need to be seen and heard to be stammering in the Outside World. This is the only way we can improve the perception of stammerers, improve stammerers self-perceptions, create a better understanding of stammering and reduce prejudice."

I don't really see that there is much prejudice against stutterers and if there are instances of prejudice (e.g. in the workplace), lots of countries have equal opportunity laws. I've argued this before, so I don't want to go over old ground. Maybe we stutterers tend to wrongly perceive prejudice, just as we have a tendency to perceive that everybody is scrutinising our speech.
And let's face it, stutterers make up only 1% of the population, and the very severe stutterers are even rarer, so we'll never be able to give "Stuttering 101" lessons to everybody in the world. The best thing to do is to show stutterers that they should just live their lives, and that stuttering is not a disability.

Leys Geddes said...

Anon, I completely disagree with your last statement: there IS prejudice and actual discrimination against stammerers. It's fairly widespread, it's real and it's not just because 'we stutterers tend to wrongly perceive prejudice'. Wherever a choice is to be made between two people, one who stammers and one who does not, there is a danger that the stammerer will lose out, even if he or she is better qualified.


Chris Douce said...

When applying for jobs, I used to skip over the equal opportunities section that asked whether you have a disability. For many years I would not disclose, but now that I am older (and wiser - although some may argue otherwise!), I am now totally prepared to accept, in some respects, I do have a disability, but it is sometimes difficult to disclose since a stammer is not something that easily fits on most equal opportunity forms.

For most of the time I don't feel disabled at all: I can get on with my day to day job, answer the phone, work with others, go shopping and try to be as efficient and effective as I can. Whilst in a physical sense I am not disabled, I do have a niggling feeling that I am disabled through society and the attitudes that other people hold. For example, although this is not often explicit (although sometimes it has been!) I have been denied opportunities because of prejudice based on how I speak. This is not fair.

Why do I say that I am disabled on the job application form when most of the time I might feel that this could be viewed as disingenuous?

Reflecting on this I feel that I am sometimes disabled by society and other peoples attitudes. If I don't get a particular job I assume it's because of the fact that I am not the right person, don't have the right experience, or not adequately qualified and so on.

Companies put in equal opportunity monitoring to ensure that they take account of and monitor workplace diversity. I think workplace diversity is an undeniably good thing (I dare anybody to argue otherwise!) If I didn't get by job because of concerns or prejudice based around my stammer, there will hopefully (and perhaps this is rather naive) be statistics that indicate that the recruitment process of a particular organisation is failing,and corporate diversity awareness is broken.

If a recruitment process does fail, this affects all people who are disabled functionally (through physical or sensory impairments) or through society as a whole.

We owe it to ourselves, and also to other disabled people to disclose (although I do accept it is a very personal choice), even if we do think our own impediments do not prevent us from getting on with our day to day lives (but, I have to confess that my own used to be a substantial hinderance).

We mustn't ever forget that it is other people who make disabled people dis-abled. It's situations, misunderstandings and fear (held by other people) that prevent people from realising their full potential.

Rich Arnold said...

I personally don't think a stutter is a disability. I've had once for 35 years now, but its severity has fluctuated radically in that time, and in the past 5 years, it no longer has been an obstacle.

My stutter has fluctuated in severity in direct correlation with my self confidence and self esteem. Feeling I belong and I am worthy makes it a non-issue. I therefore do not perceive what I have to be a dsiability.

However, it is obviously possible that what other people experience is different and maybe there is a form that is a disbility. For me, it is an obstacle that was put in my way, and I believe it will always be there trying to block my path, but I've learnt now that i'm good enough to sidestep that obstacle and despite its nuisance factor, it doesn't have to get in my way.

I know love talking in front of other people and am far more likely to stutter is a 1-2-1 situation. Also, I'm more likely to stutter around people who have known me for many years and maybe 'expecting' me to do so.