-
Blog Views
722
Patchworktogether Spotlight: Hannah, Founder of Not Your Grandma’s UK
We spoke to Hannah, the founder of Not Your Grandma’s UK, who is on a mission to show the world that disability is anything but boring.
Her new website, has just launched, go have a look! It has lots of useful resources, from a podcast with interviews covering everything from community, fitness and working, to a handbook full of tips and tricks on living your best life with disability and chronic illness.
You can also follow her on Instagram!
What would you like people to know about you, fibromyalgia, and the effects of chronic illness?
Ooh, this is a tough one! Firstly, your life is not over just because you've become sick. Chronic illness can rip through your life and sometimes it feels like you are losing everything but you can and will rebuild. It might look different to how you planned, you may lose people, but you will also gain an understanding of yourself in a way you never would have before.
What inspired you to start Not Your Grandma’s?
I got fed up with the constant questions and stares from people. I also just hated how my mobility aids looked. They didn't suit my personality. I got so fed up I actually painted my walker bubble gum pink and decked it out in leopard print. Suddenly the people who had been staring and asking questions just complimented me on my style. That's when I realised I wanted to change the conversation around mobility aids and do that by making over mobility aids to fit us.
What has been the most challenging aspect of your condition?
Other people's perceptions of me. Of course, the pain and fatigue are difficult, but it's the way others react to it. Sometimes they ask invasive questions, other times they blame you for the things you can't do or see you as difficult. It's why the social model of disability spoke to me so much. It reminds me that it's society's perception of disability that's wrong, not my disability.
Do you feel there are ways in which living and working with a long term health condition provides greater benefits for employers?
I think chronically ill people make better employees. We are better at creative problem solving and knowing our limits. We can often see burn out before it happens and course correct for it far better than healthy people. We also have greater emotional intelligence often born from others not understanding our needs.
Do you feel that your experience of your health condition has been shaped by your age? Is it harder to get doctors to take you seriously?
In terms of getting doctors to understand me,that is a whole different kettle of fish! I find that as a woman and being younger has definitely affected my care. So much so that I often take someone male with me into any interactions with medical professionals to testify to the fact that I am not being hysterical or untrue when I describe my issues. Sometimes even that doesn't work. I had one specialist outright tell me my very real results were because I needed therapy. Needless to say, I exited that situation as quickly as I could.
Do you find that people in your life understand your condition and take it seriously? Do you feel able to be fully open about it?
When I still worked in TV I hid my condition for the first year, until I had a proper diagnosis. I was scared it would affect people hiring me. As TV is mostly contract work, every new place I went to I had to go through 'coming out' as disabled which I would never do until my first day in the job.
I've been lucky with family and friends. Most of them have been understanding and accepted my limitations although I know that's not everyone's experience.
Are there any organisations, charities, initiatives or communities that you’ve found particularly helpful?
Yes and no. I found an incredibly strong community on Instagram and I am so glad to get to share that with so many people. They are possibly some of closest and most supporting friends I have ever had, and half of them I've never met in real life!
How has the community you’ve fostered on Instagram helped you?
My community is my lifeline. We share everything and support each other. I went through a particularly bad patch with my health that left me housebound. Having the community to lean on and share my experiences with was invaluable.
But the best part is that it isn't one-sided, as much as they support me, I get to help them! I get some truly wonderful messages from people saying that the educational work that I do has massively helped them accept their situation. Also, people use my infographics to teach family and friends about their disability too.
What are some of the first steps we should all take as individuals to be more inclusive of those with disabilities and chronic illnesses?
Firstly, seek out disabled people to follow online and actually interact with their work. Part of learning to be inclusive is about actually taking steps to learn about how marginalised communities feel and not assuming that one person speaks for everyone. I can only talk about my own experience. So, even I make sure that I follow as many different types of disabled people as possible so that I can understand viewpoints other than my own.
What changes do you think need to be made in the workplace, or to work culture to be more accessible to, and mindful of, those with chronic illness?
I think we are starting to see those changes with Covid. Many experts are saying that because of the length this going on, many work places may choose to stay remote even after the virus has passed. This more flexible approach to working is absolutely giving disabled and chronically ill people more opportunities to find work that fits around their illness but we also need to take it a step further and create flexible working hours as well.
What are the most effective coping mechanisms you’ve found for living with your condition during difficult periods?
Leaning into my community for sure. Having people that just get it and don't try to fix you is honestly wonderful. Especially when the rest of the world doesn't understand what you are going through.
How do you think a platform like Patchwork Hub could help people with disabilities and chronic illnesses?
Being able to showcase how skilled our community is. There are so many people in our community with really useful skills. But because of non-flexible working patterns so many of us don't work. Employers are often hesitant to employ someone disabled, so being able to showcase what we can do is so important.
