The Higher Education and Training HIV/AIDS Programme, more commonly referred to as HEAIDS has made significant strides in reaching young people at tertiary institutions (universities and colleges) in South Africa. I would describe a recent gathering as a historic moment in South African (SA) history. Over 2000 young people gathered to discuss the dire HIV/AIDS situation in our country, and what’s more, they took centre stage while senior officials and experts listened. I was invited to address the gathering, below is the address.
If everyone could stand up, raise your right hands and say #HEAIDS! One more time, #HEAIDS! Fantastic you can take a seat and do follow me on twitter @ChoonaraShakira, I hope to be trending on twitter after this discussion (… I’m just joking!). On a serious note, I know many of you may be hungry, ready for lunch, but a few key issues I would like to raise today, please bear with me, I guarantee you it will be life-changing!
Firstly, the opening panelist, Professor’s Bawa’s (Chairperson of the Higher Education South Africa) address was so fitting for the current state of affairs regarding HIV/AIDS and leadership. What I extracted as a central point from the recently launched National Strategic Plan for HIV, Tuberculosis (TB) and sexually transmitted infections (STIs) – South Africa (SA)! I ask you, when we look at present leadership in SA, do we see HIV/AIDS making headlines? No! We see corruption, we see poor leadership, but we no longer see HIV/AIDS! Tomorrow, I hope we will raise this with SA’s Deputy President who will be attending the conference. We have seen a generation of leaders pass on, Nelson Mandela the 46664 concerts to raise awareness, where do we see political leadership of that stature now, other than perhaps the Desmond Tutu Foundation! We need more of this in our political sphere, not corruption and not poor leadership!
By a show of hands, how many in the audience have visited campus health facilities at the university or colleges? [Majority of the audience raises their hands].
Wow! When you take a look at me, you may think that I have visited these facilities, especially being in the medical profession, but to be honest I have not. Allow me to draw on personal experience. Being from a very poor background, when I got to Wits University (University of the Witwatersrand), society has this stigma. If you’re standing at a National Student Financial Aid line (loans for disadvantaged students), people know that person is poor, that student cannot afford fees. That was one of my first embarrassments, it took me many years to realise that this is not an embarrassment. The second embarrassment I had, is when you look at these hands [shows hands to audience], they look perfect and that’s the thing about disability, some disabilities are invisible.
Two years ago, I was diagnosed with what is known as arthralgia, more commonly known as arthritis. The stigma I experienced at a university was immense. There were times that staff and students would tell me things, I would literally go back to my office and cry.
It’s these sort of experiences which had me thinking, would I ever, if I needed HIV information, go to the campus health facility where nurses are rude, unhelpful? Would I go to be further stigmatised? And the answer is, I never went. Now, though, I have reached a different stage in my life where I no longer care about stigma. I have learnt that you’re not disabled but differently-abled.
I never expected to be differently-abled myself, but I have always been advocating for the right of persons with disabilities. It is so easy for us to say this in our speeches, to commit in our policies; ‘Let us include gays and lesbians, let us include persons with disabilities.’ I said this two years ago at the European Union, but do we actually implement anything for persons with disabilities? When we speak about contraception, condoms, just as I mentioned the access barriers at a university, let us not even go into the access barriers for person with disabilities. Do you see wheelchair bathrooms having condoms? But, you see this in the normal bathroom?
For the second example, I am going to request someone from the audience who would like to volunteer for what I’d call a PowerPoint but not really a PowerPoint, because I was just telling a colleague earlier we have or experience ‘Death by PowerPoint’ and instead as young people we need to stand up, we need to be innovative, we need to show impact and be different, not follow the norms!
Can I have a volunteer from the audience who is going to have something to do with this scarf [holds scarf up and blindfolds Gugulethu i.e. a volunteer from the audience]?
Young people, we have been asked to provide solutions to the HIV/AIDS epidemic. I am here today, to show you what we mean by solutions, accessibility and truly leaving no one behind and specifically for those who are visually impaired.
Demonstrating vulnerability, inaccessibility & solutions for differently-abled condom usage
Shakira: Gugulethu, I have two condoms, I am placing one in your right hand and one in your left hand. Can you tell the audience which is a male and which is a female condom?
Guglethu: The right hand is a female condom and the left is a male condom.
Shakira: Excellent! What a stroke of luck, the condom packaging has pictures and instructions for usage, can you see the instructions?
Gugulethu: [Silence], no.
Shakira: There is a hotline number enlisted on the condom, can you see this?
Gugulethu: [Silence], no.
Shakira: Finally, can you open one of the condoms for us?
Gugulethu: Struggles and tears the condom in the process.
Shakira: Thank you Gugulethu, a round of applause for her!
Link to excerpt of speech: https://www.youtube.com/watch?v=hHgb0KcYRo8
That, ladies and gentleman is precisely what is meant by our interventions not being tailored to vulnerable populations. The period of risk even when attempting to use contraception for prevention, the possibility of a condom tearing. While, eventually usage of the contraceptive will be figured out by a differently-abled individual, there is a period of vulnerability where one is susceptible and at risk of possibly contracting HIV. As a young person, the one solution I bring to the table at this conference is to ensure accessibility of these condoms and I challenge industry to innovate in this regard.
I thank you!