Living with stammering
By Kevin Culverwell

As far back as I can remember, I have always had my stammer. It is a part of me, but even so, it is not something I have ever really accepted. Even at times when I have 'lapsed' into virtual fluency it has been there in the background waiting to pounce again. The two questions I think I have asked myself most often in my life are: why me?, and what would it be like to be totally fluent? To speak when you want, to say what you want and to whom you want without fear of stammering. Not to lead a life controlled by a stammer or to live in a way that brings you into verbal contact with as few people as possible, avoiding the telephone, using extra time and effort to use machines or self-service shops to avoid speaking situations.

Over the past four years my stammer has got steadily worse. Imagine something you are afraid of, be it snakes, spiders, heights - most people have some kind of phobia, not once but many times every day. For a large part of the time that is what it is like for me. I have to confront my phobia, a phobia of speaking, many times a day.

I went through all the teasing and mockery as a child, which even as you grow up can be a great source of amusement to many people. Some find it so funny that I have had people in fits of laughter before I even get a word out. If only I could get paid for it! Some people are so embarrassed by the fact that you stammer that they will avoid talking to you, just because they don't know how to deal with it. Then there are people who treat you as though you are mentally retarded, and speak very slowly and clearly to you, or tell you to take your time and start again. I want to say "I don't want to take my time and start again, I just want to say it. I want to be fluent and feel normal".

An incident that happened a few years ago stands out in my mind. I asked a woman in the street the time - not something I make a habit of, but I needed to know. I could see her wrist-watch so I knew she could give me the time. I had picked my target carefully to avoid having to ask more than one person. As I spoke I stammered. The woman's look was of fear and shock, as if I was some crazed thug or mugger willing to kill her for whatever her purse contained. I could hear panic in her voice as she told me she didn't have the time and that her husband was just around the corner. How I would have loved to explain that I had no intention of harming her in any way. Instead I just walked away feeling humiliated and degraded and avoided talking for the rest of the day.

Speaking to strangers is more of an ordeal than speaking to people you know, because they don't know you stammer and you don't know what their reaction will be when you stammer. Most people's experience of stammering is watching TV shows like Open All Hours. I have laughed at Arkwright the same as other people. At one time I was nick-named Gr-Gr-Granville, but believe me, having a stammer is no laughing matter. It can be the most frustrating, depressing and agonising condition.

Left out in Cornwall
Although I did have speech therapy as a child it wasn't until my teenage years. Even then it was sporadic and I don't recall it lasting very long, due to lack of resources. Our local authority never had a permanent speech therapist. At that time I lived in London. As I grew up I have never really bothered to seek further help, although I did go on an intensive course about three years ago. It was very good at the time, but with no real support it was very hard to maintain the advances made. I would also be out of the financial reach of many people.

I presume with all we hear about extra money being poured into the NHS that the position I was in as a child would have improved. So I was shocked to hear recently that Cornwall has only 4.6 general speech therapists per 100 000 of the population. This is half the national average and furthermore there is no fluency specialist at all. A general speech therapist deals with a wide range of speech disorders but a fluency therapist specialises in stammering, so for a stammerer seeking help in Cornwall the situation is far from ideal. Stammering is not considered to be a life threatening disorder. In the first instance it is not, but due to the psychological strain and effect it puts on many, it has and does cause stammerers to take their lives.

One field to which BSA direct a lot of time and resources is providing help for children and working with schools. Children need and deserve help and therapy at an early age. It is a crucial time.

A mother's point of view
I was prompted to write this by my son Kevin who wrote the article here. What is it like to be a parent of a child who stammers? Kevin stammered virtually as soon as he started to talk at about 18-24 months. We didn't realise at first that it was a stammer, we thought he was just a bit late in getting started to talk properly. As time went on we realised he had a problem, which is when I started to ask GP's, health visitors and anyone who I thought might be able to get him the help he needed. Believe me, it wasn't for the want of trying. These efforts went on for several years, and in all this time Kevin never told me about the teasing he was subjected to by his schoolmates. Children can be very cruel without realising it - they just think it's funny. In fact, Kevin's article opened my eyes to how he really feels about it and to some of the humiliation he has had to suffer over the years. He has never spoken to me on the matter until now.

By the time Kevin was 12 I managed to badger one of the health visitors at the school to try to get him some help, and Kevin went to a speech therapist. It wasn't for very long as they were very overstretched and just didn't have the resources for long-term therapy. After more badgering from me we were offered a place at a speech therapy school in Blackfriars, London. Kevin went there for a two-week intensive course but again there were no follow-up sessions. How I wish the BSA had existed then.

Only those who have a child who stammers know the pain of listening to them trying to get their words out. You are literally crying inside for them while resisting the temptation to just say their words for them. All the while you try to give the impression that it does not matter, so that your child will not give up trying to talk, but even then you do not know what agonies the child is going through in his or her mind.

In some ways I have been fortunate as Kevin is a very strong minded person, and as far as I know he has never let his stammer stop him from doing things he wants to do. It is other people's attitudes to his stammer that has held him back from some things. I am very proud of the way he copes, but as he said in his article, "If only I could speak fluently". That is why we are doing everything we can to help raise money for BSA to help other children. I hope all who read this article will help in any way they can. We NEED your support and we need it NOW.

From the Winter/Spring 2002 edition of Speaking Out