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Consulting people with disabilities

I can tell from my life experience quite so many people have a lot of assumptions about what I want to do. One example is that, a research was done about persons with disabilities and their relationship preference. So the person asked me what I feel about having a partner without a disability. And he thought I would respond that I don’t want to, because mostly they think that people with disabilities are comfortable with their own kind. There is this misunderstanding. So one impact– potential impact– of consultation is that you will definitely deconstruct the prejudices, and stigma, and discrimination, as well as misunderstandings about persons with disabilities.
The impacts can go just beyond the analysis, and the data, and the information, but also can be incredibly empowering. So we had a small research process, which brought a group of young people with disabilities together. And we asked them, what would you like to find out more about? And so they helped to design a little research process, which was looking at attitudes. And, you know, it just– some of the conversations that we had with some of the young people was I never knew I was– I could do this. I never knew, you know, it’s about validation. I never knew what I thought was important. I had no idea that I had these skills.
And so that transformation was happening in front of our eyes. And we had not expected that to happen. That hadn’t been the purpose of the research at all, but it became an outcome. It was absolutely incredible. If research is more consultative, if people buy in to the project as participants, as allies, as supporters, then the chance that the research findings– that the outcomes– will be taken up by their community are all the better. I think consultation will mean we do better research, that we have more buy-in and sign-off. That is, say, groups will be much more supportive of what they’re trying to do.
They’ll help us disseminate it, they’ll feel an ownership of it, and we’ll have answered the questions that need answering.
It’s really important to go to more than one source. We should never assume that one disabled person can represent everybody, or that even the multiple voices are representative. It gives a snapshot. But similarly, we shouldn’t also go just to one organisation. So ideally, in a consultation with disabled people, we should look at the diversity of gender, of educational background and employment. And just be conscious of that diversity within who we’re consulting. Trying not to be extractive, just taking information, but building up trust and involving people with disabilities in the whole process. So that it’s not just come in, ask some questions, and then go out again.
So I think meaningful means you really have to understand where people are coming from, their perspectives, and allow time and opportunity for them to express themselves. Engage them at all levels and then make sure that their needs and then their feelings are expressed at all levels of the consultation. Provide feedback to them after the consultation. And especially on the outcomes of the meeting, of the consultation, not the outcome of what you want to do. And then also receive recommendations related to it, based on the outcomes that you shared with them. First and foremost, the fulfilment of appropriate reasonable accommodations.
Because people with disabilities may not be able to express what they want to say or if their reasonable accommodations are are not met. In this instance, it’s very difficult to interview a person who is deaf without having a sign language interpreter. It’s very difficult to engage that person, for example, a blind person, if the questions or maybe the points, as well as the purposes, of research are not communicated in a way that is accessible for the person with a disability.

In this step, we hear from Myroslava, Tom, Lorraine, Suresh, and Yetnebursh about why consultation is important, and some practical steps on how we can do this.

Please share your thoughts about this video below. Have you ever been consulted as a person with disability as part of a research project? Or have you consulted people with disabilities for a research project you have been involved in? Please share your thoughts on what worked and what did not work below.

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Global Disability: Research and Evidence

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