THE DIFFICULTIES AND TRIUMPHS OF AN ADULT LIVING WITH CP.
My name is Barenise Peffer and I am a woman with Cerebral Palsy. I am classified as having spastic diplegia. Growing up as disabled was very difficult and as I went into adulthood I thought it would become easier, but alas, that proved to have its own difficulties, but also triumphs......
I attended Eros School and went on to a mainstream school to finish my grade 12. I went to UWC where I completed my degree in Library and Information Science. When I finally graduated I had a dual qualification which was teacher and librarian. While at university I was faced with many obstacles e.g. climbing stairs was always a nightmare for me, and there was just no way of escaping climbing stairs. I seemed to be attracting guys to me because they were always around when I was struggling up the stairs.
The lecturers in the Library and Information department were also very accommodating towards me. I found it very difficult to keep up with taking notes and my lecturers especially Mr September and Professor Dick would give me copies of their notes after class, and that helped me a lot, and that could also be the reason why I never bunked their classes. Another thing that the lecturers did for me was to request that all their classes be on the ground floor of the lecture hall, I also realised that the other students who were not disabled were just as happy to have the classes on the ground floor.
During the time I was at university there was no provision made for people with disabilities and I was forced to speak up for myself. I was also allowed to live on campus even though the hostels were not accessible to students. I managed the stairs until I went for a rizhotomy and I was forced to use a wheelchair for about 2 months. I remember the matron suggesting that I stay at home and get my lectures via post because the hostel was not accessible for a wheelchair. I stood my ground and demanded that a ramp be built at the hostel and they actually complied with my request.
After completing my degree I was under the impression that it would be easy for me to get a job even though I have a disability, because I had a degree which made me a professional. After my first interview it felt as if my crutches were kicked out from under me because of the questions that were asked during the interview. I discovered in my quest to find a job that if I did not mention my disability I would get an interview, and if I did mention it I did not even reach the shortlist.
I discovered that it was a blessing in disguise for me to have a dual qualification, because even though I did not get a job as a librarian I was able to get a job as a teacher even though it was always on a temporally basis. I taught at 2 mainstream schools and my experience at the 2 schools was very different.
At the first school I experience almost 100% acceptance and the staff were very accommodating, especial during exams time and they made sure that the classes where I invigilated were on the ground floor. My disability was not a problem for the staff and students alike and because of my presence at the school students had to do research on people with disabilities. At the other school the attitude of the principal towards me was very negative and he used my disability as an excuse when I experienced problems with discipline, even though the rest of the staff also had discipline problems. There was also a time when I was unemployed, not because of there not being jobs available, but because of my disability.
In late December 2000 I heard about a Librarian post that had become available at Helderberg College in Somerset West. This was a private institution that was operated by the SDA church of which I am a member. I sent my application through being aware of the fact that I did not have any experience in the library applications that were used in the library. I also decided to mention my disability and kept my fingers crossed for at least an interview.
During the second week of January 2001 I received a call from the director asking me to come in for an interview. I was thrilled and excited beyond words. I did not have my own transport, but fortunately my dad was able to take me to Somerset West which was a 30 minutes drive from Cape Town. The Library Director was very friendly and I immediately felt comfortable, and thought that the interview went quite well. Two days later I got a call from the director telling me that the post had gone to another applicant but that she could offer me a part time position for 3 months. , I grabbed that offer with both hands. I was then faced with another big challenge and that was transport. I managed to get a daily lift from a guy who was transporting school children to Helderberg College.
My contract was extended until the end of December 2001. I was under the impression that I had to leave at the end of the year and when nobody said anything I just assumed that my contract had been extended to March 2002. After the holidays I found a letter on my desk, stating that I had been appointed in a permanent part time position. I was so thrilled when I read the letter. It was the first time since graduating that I would be in a permanent position.
In January 2004 I was offered a fulltime position which I grabbed with both hands. I felt so valued because for the first time I was judged on my ability and not on my disability. I am going into my 9th year at Helderberg College and I still have my daily struggles with the stairs in the library and on campus. I have made the administration of the college aware of my struggles with the stairs and they are looking into ways of making the college more accessible. I am teaching first year students information skills, as well as classifying all the books in the library. I also assist students with reference work and research.
As an adult with CP I also had the need to love and to be loved. As a young girl I dreamt of meeting my prince on his white horse. I also decided a long time ago that I would not fall in love or marry a disabled person because it was enough that I had a disability. I never in my wildest dreams thought that I would actually get married to a disabled guy. It was January 1989 when I received a call from a guy from Gauteng, who introduced himself as Eugene Peffer. He went on telling me that he wanted to know more about Eros school, and I asked him where he had obtained my number and he told me he got my number from Eros school. The first thing I noticed about Eugene was the fact that he had a stutter, I immediately cut the conversation short and told him to write a letter as to what he wanted and I would then give him the information.
Eugene wrote the letter and also informed me that he would be coming to Cape Town in April 1989 and would like to meet me. I agreed and on the 6 of April 1989 we met face to face for the first time. Eugene also has CP (athetosis), but I must say that I was quite impressed with him. The next day I received a bouquet of flowers from Eugene and that really bowled me over because it was the first time that I received flowers from a guy.
By the time that Eugene left he declared his love to me. I was not taken by his declaration because I did not believe in love at first sight. I agreed to be friends with him. By December of that year we were a couple. After 5 years we decided to get married and we were married on the 18 December 1994. Our parents gave us their blessings.
When people meet us for the first time they are always surprised by the fact that 2 disabled people are married. We went to live on our own and we did our own housework. We decided after 3 yrs of marriage to start a family, and I discovered in January 1998 that I was pregnant. We were very excited at the prospect of becoming parents for the first time. The pregnancy went well and at 38 weeks I had a caesarean section and gave birth to a healthy baby boy named Stefan. My mother assisted me with Stefan while I was recuperating from the operation. My parents were a great help to us especially in terms of transport because we did not have our own car. Whenever people came to visit us and see Stefan the first question that they would ask was whether Stefan was normal, and my response would be that he is not normal because he had blue eyes and blond hair and we did not have the same colouring. As disabled parents we managed quite well with Stefan.
We also had to make use of public transport. I was using crutches but fortunately Eugene was able to carry Stefan. When Stefan started to go to crèche Eugene used to carry Stefan on his shoulders and there would be people who would make remarks like “ how can the mother allow her child to sit on the shoulders of a drunk man?” Amazingly Eugene carried Stefan on his shoulders until he was six years old without him falling off. Stefan knew from a young age that I had a disability because of the fact that I was using crutches, whereas with Eugene it took a much longer time for him to become aware of his father’s disability.
After 4 yrs we decided to have an addition to the family and I fell pregnant again. After 2 months I had a miscarriage and I found it very traumatic and only after a year we decided to try again. I fell pregnant in October 2003 and was quite scared because I was afraid of losing this baby as well.
I did not want to tell anyone about the pregnancy but Eugene could not keep it to himself and told the family. I decided to go to the doctor for an ultrasound just to make sure that there was a baby. I remember asking the doctor whether there was a baby and the doctor told me that there was not just one but two babies and they were already 14 weeks old. I could not believe my ears and told the doctor that I was not supposed to have twins. The doctor showed me the 2 heads and I could not stop laughing. Eugene was also very excited when he saw the twins on the ultrasound. The family were very surprised but very happy when they heard about the twins.
The pregnancy was quite challenging especially where my mobility was concerned. I had to make use of a wheelchair, and from the 5th month I could not do any more house work or cooking and Eugene had to take over the household duties. At work my boss put a sofa into my office so that I could take a nap during my lunch hour and she made sure that I did not go down the stairs on my own.
I was able to work until my 8th month. Fortunately my workload was not too heavy and everyone at work helped to control my stress level. Eugene and my family also helped me to enjoy a stress free pregnancy. I had my fears concerning carrying the twins to term as there were a few prophets of doom telling me that I would go into early labour because I was having twins. At times it felt as if the twins were squeezing the breath out of me especially when they were moving. I was also very fortunate to be able to get physiotherapy from Mrs Hendrickse who worked at Eros School, and I believe that the physiotherapy played a big role in maintaining my physical condition.
I also discovered with both my pregnancies that the doctors that attended to me were not well informed about CP. I felt very good when I told them why I opted for C. Section and why I could not have an epidural because of the rhizotomy. The twins were born on the 7th of July 2004; they were girls weighing 2.5 and 1.9 kg respectively. The recovery process after the birth was very slow because of the fact that I did not walk for about 3 months I stayed with my mom for a week and she assisted me with caring for the twins and the only thing I had to do was to feed them.
At first I had problems with breastfeeding because I was feeding them one by one and after the nurse showed me how to breastfeed them at the same time it was much easier and less time consuming. The twins really made me aware of my disability, because I could not carry them myself and always needed assistance. Eugene had to jump in and help from the start because we did not have any extra help at home. One day my mom saw that I was not coping and suggested that I come to her on weekends and she and the rest of the family would then help me with the twins. Every Friday I would pack a suitcase and go to my parents for the weekend.
I found going back to work quite stressful because I would be awake during the night to breastfeed the twins and at 5 o’clock I had to get up to go to work. I had to put the twins on the bottle and thought that breastfeeding would come to an end but it was not to be. The minute I came home the twins wanted to be breastfed and I ended up breastfeeding them for 2years. The first 2years after the birth of Marushka and Larissa were very difficult in terms of coping with them and work.
I think children have a certain instinct concerning disability, because the twins never demanded that I hold them while I was standing but they would show me a chair or sofa and when I was sitting then they would climb up to sit on my lap. The twins would demand from Eugene to pick them up at the same time and he would then hold both of them in his arms. Once again the twins were aware of my disability very early in their lives, but they were about 4yrs old when they remarked to Eugene that he ‘does not speak right’ as they put it.
Stefan is 11yrs old and he was diagnosed with ADD and attends Eros School doing grade 5 and I know that he can and will be able to progress because he is in one of the best schools. The girls are 5yrs old and attend a crèche and we as parents are just trying to figure out how the minds of twins work.
As I look back on my life especially as an adult with Cerebral Palsy, I see more triumphs than difficulties. I am so lucky to have such good support that is always there when I need assistance.