Golriz Ghahraman feels the pressure & More Latest News Here – Up Jobs

Golriz Ghahraman is very aware of the importance of visibility when it comes to under-represented groups. When she openly spoke about being the first refugee MP in Aotearoa, the response from people who have gone through the same journey was powerful. It was similar when she shared her multiple sclerosis (MS) diagnosis, a condition when your immune system attacks your nervous system and your nerves are damaged to the point where it causes disability. Initially Ghahraman had blindness in her left eye, but her vision has returned. She is immunocompromised and lives with chronic fatigue, and the bottom of her feet are numb due to the nerve damage.

She admits there was trepidation when “coming out” as disabled due to people having low expectations of her, but she said visibility is helpful to those who are marginalised. She tells Olivia Shivas that’s one of the reasons she decided to participate in the production of Unbreakable, a TV show about Kiwis with a disability.

How are you feeling right now – physically and mental health-wise?

My baseline anxiety is high but not in a debilitating way for me yet, thankfully. But we’re living through a pandemic and as an immunocompromised person, myself and other members of the disability and chronically ill community are facing access issues to services. I’m not quite sure what’s going to happen with our hospitals the next time I need to have my MS treatment. It sort of slows you down and you do have to have loads more time in an MRI machine or in hospital than most people, but more or less I’m OK.

READ MORE:
* Golriz Ghahraman: I was told by a doctor to be ‘rational’ when trying to get a diagnosis for multiple sclerosis
* Green MP Golriz Ghahraman reveals she has multiple sclerosis
* Multiple sclerosis: What’s important to know

Why be on Unbreakable and show the vulnerable side of having multiple sclerosis?

The thinking process was similar to “coming out” and talking about being a refugee. There was definitely uncertainty for me in terms of like owning that label and whether I would be feeding into the successful refugee narrative. As I connected with my MS community, one of our challenges is the idea that being kind to us means expecting not much, especially in the workforce. When Unbreakable wanted to talk about my work, I thought that’s one of the stories that can be there. The workplace is meant to be accessible, but the system is what’s keeping us out of certain work.

Do shows like this reinforce negative stereotypes about disability or is it creating space for potential for change?

I totally know what you mean about harmful narratives, but when I went public with being a refugee or living with a chronic illness, I had a lot of people reaching out saying ‘I never thought that someone like me could be and could have their story told’. I have people literally coming up to me bursting into tears telling me about their MS diagnosis. We don’t just want disability programmes to tell disability stories, we need to be mainstreamed. We need to be behind the camera and writing those stories. We need to be on boards making decisions. We need to be in the House of Representatives. We need to be the nurses and doctors. But part of that is also very specific spaces for telling just disability stories, I think.

Do you feel a responsibility to represent your community?

I definitely feel the pressure to keep up. When I had my first MS attack and started losing my sight it took other people telling me to see a doctor. I ended up missing a day and a half of work, and I felt like that wasn’t OK. It’s manyfold – as a woman of colour, and I’m considered sort of young in my space, and then you add a disability or chronic illness, you feel the responsibility to prove yourself to the able-bodied people so they don’t underestimate you. I also feel a responsibility to my community of chronically ill or disabled people to prove something on our behalf, which is not ever what I expect from anyone else. I think we kind of put these things on ourselves.

Since your diagnosis of MS, has your perspective changed on the health system or wider systemic barriers disabled people face?

You can’t help but be changed by an experience of being very much in reliance on the health care system. When it comes to the cost of treatment, there’s a lack of dignity sometimes because there’s this perceived cost benefit issue. All of those cost benefit decisions that policymakers make on behalf of different communities, it becomes very crystallized in a human way when you’re in that community. So as a policymaker, it’s so important for us to have those lived experiences when you make that decision.

Would you ever want to cure your MS entirely?

So far I haven’t felt the urge to cure it. I’m very, very lucky that I have access to the treatment that I have. And the only thing I have to live with is that it’s very slowly progressing. It hasn’t progressed for about a year at all. So we’re managing it. I’m in a group of people with a chronic illness that has a cure with stem cell treatment. I haven’t taken it, even though theoretically I could try and get a mortgage or something. But I haven’t looked into it at all, and I feel OK about it so far. But instead of talking about a cure for this particular kind of illness, we should be celebrating actually making the world accessible.

Watch: Unbreakable screens Tuesdays, 8.30pm on TV1 or TVNZ+

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