ADDRESS TO THE STANDING COMMITTEE ON PRIVATE MEMBERSí LEGISLATIVE PROPOSALS AND SPECIAL PETITTIONS
12 September 2001

Good Afternoon Honourable Members and Others. Before I begin, I would like to introduce the lady and I. Her name is Margot Luyt, sheís not my mother, sheís my lover. I like an older woman, itís like red wine, something to appreciate, something to treasure, it mellows with age and it is full bodied. Anyone else appreciate a good, red wine?

My name is Graham Clarke and I am a quadriplegic and am unable to speak. This is all as a result of a massive stroke I had in 1984, but more of that later. I guess most of you have given me the once over and noticed that I have no shoes. Instead of making excuses Iíll just say. If Mr. Nelson Mandela can meet the worldís most important people with his shirt hanging out, then I can go without shoes. Another thing I must just mention, the stroke has also affected my emotional centre so if I do get a bit emotional, just ignore it. Iím not sad at all, on the contrary. I look at it like this. Itís my disability and Iíll cry if I want to, cry if I want to.

So why donít I wear shoes? Well, I have complete sensation throughout my whole body and everything else works besides my limbs and mouth. The most important being my brain. The unfortunate thing is that my working brain and a body that is on strike doesnít seem to convince people to employ me. But, that wonít get me down too much because they donít know what theyíre missing out on! I will quickly explain how the Liberator (my communication device) works before I give you a rundown of my history.

History

After completing a three year diploma course in Public Health at Durban Technikon in 1979, I was employed as a Health Inspector in Durban City Council. I considered resigning eighteen months after I was employed as the job wasnít what I had expected. I had been around with a health inspector on the border and what I experienced working down in Durban was completely different. Not my cup of tea. Shortly before I decided to resign, my brother, who was studying physics at Durban university was asked to go down to Antarctica for the year to study the aurora. When he heard I was thinking of resigning, he joked and suggested I apply to go down to Gough or Marion Island. I gave it some thought over a month and decided that Iíd apply for any position on the two teams. I was still young and restless and thought it would be a great adventure as it was only a year.

After going through stringent psychological and medical tests, I was selected to be a meteorologist on the following team going down to Marion Island. This resulted in me under-going a three month crash course in meteorology at the weather station just outside of Pretoria. The team assembled in Pretoria where we were trained in our respective fields for sometime before departing from Cape Town by ship in April 1982. There were ten of us who left and were being joined by a biologist that was already down on the Island with the team we were relieving. To cut a long story short, the year passed and it came the time for us to return home.

On the way down my relief weather-man fell ill and they had to turn back, drop him off and continued down with one man short. I quickly offered my services to stay on for a further six months, it was granted and I joined the other team. It was during these six months that I finally found myself and knew where I would be moving on to once I had returned. I had decided to either go into teaching retarded or disabled children, making prosthetics, biomedical engineering, occupational therapy etc. I wanted to help society in some way as I had seen a lot of life in my previous job. Once I had returned from Marion Island, I went to various places to enquire about my proposed career change. Strange as it may sound, some of the places I went to actually help me now. One of the places call on me to help out at Cape Town University from time to time.

Anyway, I had to go sort some things out with the department I had been working for for the past nineteen months in Pretoria and somehow during my time up there with them, I managed to be persuaded to lead the following team going down. I figured out that I needed money to study further and the place had this strange attraction that kept enticing me. So, I signed up for another year to lead the forty-first expedition, be their medic as I was trained as an operational medic during my military service and to be the teams store man. Once again we all underwent various training courses which included a course in dentistry. Three months after leaving for the Island, I fell ill myself, ended up being semiconscious and was evacuated by navy ship to be brought into Tygerburg hospital. I was diagnosed to have suffered from a massive stroke which has robbed me of my speech as well as the ability to control all my limbs. I was just about to turn twenty-six.

I would like to stress that it is not my intention to get as much money as I possibly can so I can lead an extravagant, lazy life of retirement. There is much more to life than sitting around in a vegetative state. I equate life to Little Jack Horner. He took the effort to put in his thumb and pulled out a plum. If we donít put an effort into our lives, weíll get nothing out. Marion Island also taught me procrastination and apathy are mans greatest enemies. I am determined to get involved in society be it in the disabled community or not.

Iím not comfortable doing this bit because I donít like blowing my own trumpet. Iíd like to share some of what I have been doing over the last couple of years. I spend most of my days, when Iím not being washed and fed, working on my desktop computer. I experienced a dramatic change to my life once I had been connected to the Internet and had the use of email. I could sit in my little room and communicate with people from all over the world. For the first time in years, I was in control of my communication and now I was in control of my correspondence, all done independently. Through email I have been able to assist people, particularly from the disabled community, from all over South Africa and the world. I have taken part in several discussion panels over the Internet and email concerning the improvement of communication devices. I have also taken part in student surveys from all over the world which include the South African universities. This is all to do with augmentative communication. Then I address the speech therapy students at the medical school quite regularly. I am on the national coordinating committee of Interface. Interface deals specifically with alternative and augmentative communication. Our mission is to help everyone thatís unable to speak to have some means by which they can communicate. I am certain you all will appreciate how important communication is to a person. Communication is the foundation in life. Everything from the flowers to people communicate in some way or another. In fact, I have a lovely quotation that some American statesman said in the nineteenth century, it goes like this, If All My Possessions Were Taken From Me With One Exception, I Would Choose To Keep The Power Of Communication, For By It, I Would Regain All The Rest.

I am also a member of the Quadriplegic Association of South Africa. This organisation was established to help and assist all quadriplegics to empower themselves to their full potential. It does so by encouraging the establishment of self help centres, providing computer and other training for quadriplegics, support in other areas and recreational and sport development.

Before I end off, I would like to encourage each and everyone of you to keep on keeping on. One has to face a lot during our life, some have to face more than others. Why, I donít know but I believe we must look at the whole picture. Life is basically one experience after another and itís how we manage them that is the issue. Theyíre either good or bad experiences. We then need to learn how to navigate through these experiences wisely and safely. That is, to learn what experiences to avoid and what experiences to keep hold of. I have found that when I become despondent, lazy and wanting to die in some instances, I always return to the most basic of things and build myself up from there. Itís like going right down to the foundations and starting to build oneself up from there. Getting on top of small tasks launches one to higher levels and that gives one more confidence to tackle larger tasks.

I also find that it helps when I consider other peopleís lives and how they manage under worse circumstances. That also gives one the courage to continue. Just as looking at things that are outside of the body helps one to cope, looking within oneself is just as important. You have to learn to have your body under your control and I believe one needs to get your body listening to your mind, heart and spirit. Ultimately striving for a clear ring as in a tuning fork. Of course itís easier to say than to put it into practice. Being able to slow down sufficiently and look within also enables one to appreciate the presence of a higher power, most of us believe it is God, and from reading his word, we know that we have a predetermined destiny. Knowing this gives one courage to continue with life and all of itís complications.

It is also imperative that we do everything with love. If you give love, you receive love, it is that simple and it is all in the bible. God is love. Love conquers all. Life is all about love, compassion and respect. I just love the story about the good Samaritan because it encompasses all these qualities. We must also strive to attain such qualities. However, we are all human and fail often but we must continue no matter what. I have been on the receiving end of love, compassion and respect so much through my disability which has been an incredible blessing. Unfortunately though, Iíve also been on the receiving end of Disrespect, absolutely no compassion whatsoever. Definitely devoid of all love. It has been hard to keep on going but, Iím not going to allow anyone or any situation get the better of me. They might break me for a week at the most. Despite considering suicide a couple of times over the last sixteen years, Iíve decided not to give anyone the pleasure of putting me in a coffin, that Iím certain of.

I received a beautiful email quote recently which I feel I must share with you all. It says. "Accept fate, and move on. Donít yield to the seductive pull of self-pity. Acting like a victim threatens your future."

Another method is to continually set yourself goals, no matter how small or irrelevant they may seem. Once again, building yourself up from the foundations. This foundation where you empty yourself and filling yourself with Godís power to set you on your course again. I have set myself a number of goals this year. Them being, to work for and to collect funds to enable me to purchase a kombi of my own as transport for the disabled is nonexistent (I also want to get more involved with non talking, disabled children and go out to the various special schools), to be able to move out of the institution Iím presently living in and a possible trip to Denmark to attend the International Society for Alternative & Augmentative Communicators biannual world conference. It has been a great honour addressing you all, thanks for listening. I sincerely hope that what Iíve spoken about helps one or two of you. Thanks once again. Are there any questions.