Happy new month LTS Family!
Our March feature is a disability unit administrator at the Cape Peninsula University of Technology; she’s also an MPhil (Disability Studies) student at the University of Cape Town. Delicia speaks to us about having albinism, her work and family.
Tell us a bit about where/how you grew up, and the type of environment you grew up in
I was born in a little town in Namibia called Rehoboth. For the first four years of my life I lived with my mom, my sister and our grandparents.
When I was five I waved goodbye to mom while she was standing on the platform at a train station in Namibia. I saw her silhouette get smaller as the train moved further away from the station. I didn’t know that I would only see her again after six months so I didn’t cry or fuss even though I was surrounded by strangers. It took three days before we reached Cape Town where I was sent to attend a special school for blind and partially sighted children. My first day was very traumatic; I was a new child at the school, all the other children formed a circle around me and started to touch me (to get to know me). All those hands touching me at the same time; it freaked me out and I cried for a week.
Our lives in hostel were quite regimented. We had set times for when to wake up, eat, go to school and when to sleep. It was the same thing every day for six months at a time and in my case, for thirteen years. I shared a dormitory with 19 other little girls and we shared ablution facilities with 20 slightly older girls. At the hostel we had a few housemothers who cared for and disciplined us, there were two medical sisters for administering medications for when we got ill, then there were two teams of three or four ladies who prepared our meals and another four who did our washing once a week. We were not allowed to do anything or go anywhere on our own. All we did was go to school, go to church (which was on the grounds), do some extramural activities (athletics, netball, goalball) and listen to music and stories on the radio. Sometimes we had organized outings but I discovered later on that this was not nearly enough. I grew up very sheltered at school and only went home to visit my family twice a year. Every time I went home, it took me a while to get used to everyone and just as I felt like I fitted in, I had to leave again. It was tough saying goodbye every time but at the same time, I was looking forward to going back to school because I had friends there.
What inspired your,decision to work in disability Advocacy?
At first, I just needed a job away from what I was doing before. So I wouldn’t say that working in this field was a conscious decision on my part, it just worked out this way. I believe that it was in God’s plan because I never saw myself as an advocate for anybody, but here I am and I love what I do.
What does your day-to-day work entail?
I do talks in the different faculties where I speak to new students about disabilities and about the services that we provide. I also assist students with disabilities in all 8 CPUT campuses with bursary applications, residence placements and academic support. I also do exam concessions, meetings with lecturers and other staff who work with disabled students.
How have you found working with university students with disabilities and what have been the most challenging aspects of your work?
My work is really rewarding. I get to see the transformation of young people who – when they first start – rely heavily on others to speak for them and by the time they graduate; leave with confidence and pride. Their self-esteem and independence grow, and I’m proud I play a role in that.
To answer the second part of your question, I would have to say that there are a number of things that make my work difficult. The most important one I would have to say, is the fact that the decision and policy makers know nothing about disability and how it affects peoples’ lives and therefore always make decisions without thinking how it would affect the people living with disabilities. Sometimes it is also difficult to live up to the expectations of people with disabilities because they often expect you because of the office you hold) to perform miracles and get them what they want immediately which in most cases, is impossible. Then there are those times when you can see the need and you really want to help but your hands are tied because of one or other policy.
In talking about your experience with having albinism and trying to educate others, what have you found people struggle to understand?
There seems to be a general misconception that all people with Albinism are related. I also find that many people are not aware that people with Albinism have poor eyesight.
What are you hoping people take away from your story and your work?
I don’t know if what I have shared here would be considered inspiring but I am doing a job that I love, I am healthy, I’ve been married for 18 years now, I am a mother of two beautiful children and I am a student. My point is this, when I was young, I never thought I would have any of these things and getting to this point was not easy but the journey was worth it.
What message would you like to leave for young people with albinism?
Love and accept yourself. The sooner the better. It took me many years to get to the point where I can look at myself in the mirror and think that I am beautiful and sexy. Once you have accepted yourself, what other people say or do to you, becomes less hurtful. Do not give other people the power to belittle your existence or make you feel less than. You are beautiful and perfect, just the way God intended you to be. Grab every opportunity to educate yourself and to improve your life and of those around you. It is not going to be easy to surround yourself with people who love and respect you for the person you are and use that love to draw strength from on the days when you feel defeated. Be aware that there is a lot of ignorance out there so be patient and kind with those people. This is something I still have to remind myself to do.