Disabilities | Free Full-Text | Hearing Their Voices: Self Advocacy Strategies for People with Intellectual Disabilities in South Africa
Where capacity permits, with support and accommodation, given that self-representation is central to rights advocacy, and that significant barriers to self-representation exist for those with potential and interest in participating in policy level self advocacy, efforts are needed to overcome these barriers. Direct participation can help policy-makers more accurately reflect the diverse needs of citizens in the policies that drive investment and resource allocation.
The overall aim of this particular study was to investigate what strategies are best for people with intellectual disabilities to self-advocate for inclusion of their priorities in public social policy development and implementation in South Africa.
The research question for this study is: What practical strategies are best for people with intellectual disabilities to engage in self advocacy initiatives to influence social policy development and implementation which have an impact on their lives in the South African context?
The three sources of information were triangulated. The following image was developed to depict the themes which emerged across the data sources.
The overall theme entitled “Hearing the Voices” centred around the need to hear the voices of people with intellectual disabilities. This overall theme highlighted the need to no longer silence disabled voices and to provide spaces for peoples’ voices to be heard. The following quotes from Richard and Izzy demonstrate the historical silencing of voices of persons with intellectual disabilities and the growing pushback by self-advocates challenging these exclusionary views:
“you know, it starts off with the understanding that people with intellectual disabilities have a voice…. why might we exclude people with intellectual disabilities from the conversation?”
You know, this time in the world, there are people who don’t regard people with disabilities as advocates or don’t seem as an advocate to them. So, they can actually tell them, no, I am a person and I can, I can talk for myself. No one can make decisions for me, I can make my own decisions
Participants in this study repeatedly noted that they continue to feel excluded from decision-making which has an impact on their lives. They, and other people with intellectual disabilities, still live in a society in which prejudice and stigma continue to have an impact on their exclusion, including the exclusion of their self-identified priorities for public social policy directions. Richard echoed this sentiment, and highlighted the lack of integration despite transformation, in that people with intellectual disabilities are often present in the communities but are not participating in society. He spoke about how the legislation is present, but is not being actualised.
“I’ve said this before on various occasions we’ve reached transformation but we haven’t reached integration so transformation means we’ve got the legislation that says certain things with regards to discrimination, specifically discrimination in the workplace and those sort of things which is which is what we deal with (at the NGO) but we haven’t been able to reach integration’s as yet so we still struggling with the part where we go we have this legislation which is the transformative part of it but we haven’t integrated that into our mainstream society”
Ben spoke about stigma and how this impacts his identity as a person with an intellectual disability and how people with intellectual disabilities are often infantilised and are perceived as less than other people.
Ben: It’s views that are given by other people, that make people think like that… that intellectual disability is not right and stuff like that, (later)… You are baby. You are a baby… you act like a baby and stuff like that.
In this interview Zola acknowledges the number of challenges South Africa faces, where people with intellectual disabilities are not seen as a priority to support.
“In our country we are constantly making excuses about the high unemployment and how people with disabilities are at the bottom of the food chain”
Writing strategies were highlighted as a viable strategy by several of the participants.
There were a number of writing strategies identified, including letter writing, position pieces, and documents, but the underlying theme was that all participants placed value on the power of the written word. Lexi spoke about her experience as an author and radio show personality. She writes articles, and position pieces on her experience of being a person with a disabilities. She also spoke of other concerns which were important for her to write and advocate about, beyond being a person with intellectual disabilities, highlighting the need to see people with intellectual disabilities as the complex multidimensional people they are, rather than narrowly framing their lives and interests only through the lens of their intellectual disabilities. Using the written word was a significant theme, in both the scoping review and the review of toolkits as well and this referred to writing opinion or position letters, drafting policy documents, writing letters of complaint, or contributing to or writing position papers.
Where participants struggled to read they noted the importance of supporters to assist them. Izzy described how her supporter might help her compile her presentations and assist her with the reporting.
Strategies for self advocacy engagement in public spaces were described by several participants. Ben highlighted the opportunities to access public spaces and be present in the communities by suggesting strategies such as protests or demonstrations. Lexi described being present on various panels and being present and visible in several interviews. Richard described an example where his institution had experience in arranging a placard demonstration on gender based violence initiated by young adults with intellectual disabilities and how valuable it is to be seen.
“Now for me, when it was when I actually had to do a presentation or speech or talk for myself, then I at first, my first time I was nervous. Because I’m standing in front of, how can I say, 100 people then I have to give my life story. However, then later on again I got used to it because yeah, because it’s people that I know will be in the audience and they now want to talk to me”
Meredith explains how she might create opportunities for self advocates in the training programme to engage in the community. She tells a story of one particular group participant:
“And you know he might just love having the job of going out and I think there was something more than being located in a public space which was really important. And for some and for him to just, even you know, maybe I misinterpret, but I think for him just even just seeing the visibility of being in the public space and sometimes I might purposely not get enough milk, so he can just enjoy that experience of walking through a public cafe and feeling a sense of purpose in a regular public space.”
Several of the participants referred to using social media as a platform to spread awareness. George and his mother named specific social media sites that have been utilised to share their perspectives and hear their voices.
Mom: we started getting phone calls from people all over wanting to interview him, and wanting to know about him and it was just truly an overnight sensation, I guess.
Interviewer: An overnight celebrity.
Mom: Yes, 15 s of fame.
George: Yes, that’s right… fame!
Lexi alluded to the same point, and addressed lack of emphasis on disabled voices throughout history, and how these voices are often silenced. She provides a concrete suggestion to promote inclusion, and calls for mainstreaming of disabled voices in society. Ben reflected on the South African context, the oppression that he faces as a person with an intellectual disability and suggested that story telling can be a strategy for raising awareness.
We need to work on the treatment of people with disabilities. Like the president said so… yes we do and maybe as you say to tell those stories so that we can highlight the injustice and the oppression injustice ja… and prejudice. With the stereotypes and stuff like that.
Regarding the subtheme of Helpful Supporters, the role of supporters was identified by all three data sources as essential to the self advocacy movement. In the interviews, Derek spoke about the role of using supporters and how they may be necessary in scaffolding the process and helping the person with intellectual disability achieve their goals.
Interviewer: Okay, and the other people who are part of the advocacy group, who are they?
Derek: They are also, a few of them is our staff members. Like the job coaches are staff members and some of them is the trainees from each workshop and the job coach leads the meeting and we have one of our general managers to sit in the meeting also.
Participants in the study acknowledged how the supporting persons (parents, professionals, colleagues, peers) had a variety of roles, including driver, reading support, companion, editor and more. This finding was echoed in the literature reviews. Izzy furthered this point, and described her first hand experience of having a supporter who assisted her with self advocacy initiatives.
Interviewer: And tell me, tell me a little bit about the, the, idea of the supporters. Who was your supporter? What did they do for you?
Izzy: Now, you see, I actually paid the supporter. Now, yes, so the supporter that might now help me with getting my reports ready, that time she was the general manager.
Izzy: Oh yeah, so whatever she did was she, compiled my reports with me, but in a professional way on her laptop. Yeah, and then she will now sit with me and ask me, now what do I want to say? And then, (name) was my other supporter, she was actually technically in the board meeting, so she was my supporter and she was my chauffeur.
All of the strategies suggested above highlight the importance of having the voices of people with intellectual disabilities heard, valued and respected.
Lexi: “but if we just take the powerful tool of our ears and our voices and listen maybe we can combine those stories and make a difference”
Limitations of the Study
The ten year period used for the scoping review only yielded 7 papers for inclusion, and broadening the time period for the review can have included more papers for review. In addition, only English language papers were indexed. More participants with experience advocating at a social policy level may have elicited further insights.
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