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
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 is 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
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
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
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 illness?
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
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 your most
effective coping mechanisms you’ve found for living with your condition during
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
How do you think a
platform like Patchwork Hub could help people with disabilities and chronic
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.