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Image shows the hands of Karen's mum, holding a Jamaican badge and key ring and wearing bracelets showing Jamaican colours.

Speaking up to improve services for Black people with MS

Karen

My parents are Jamaican and I am Black British. I did not know anyone with MS at the time of my MS diagnosis and my knowledge of MS within the Black community was non-existent.

My health professionals were kind, compassionate and helpful. It is important to me to appreciate their expertise then and now, for how they help me cope in ways that suit me. Over the years I became an expert too with my MS.

Being judged by others

Having a strong family network is very important to me. And there was no judgement within my family circle. However, when I’ve been judged by others, it has been hard to tell what the real issue was – my disability, my colour, both or something else.

When challenged, people imply that an issue may be related to my disability rather than colour. However, this has been questionable in the past. Stereotypes about disabled and Black people definitely exist.

Wrongs cannot be made right if people are not made aware, able to admit it, or be accountable for their thoughts and actions.

Involving a more diverse range of voices

Windrush, BAME (Black, Asian and Minority Ethnic), Black Lives Matter and Black History Month are familiar terms of reference for Black people. And recent happenings in 2020 have helped Black collective voices and other voices to come together more.

This can be positive, helping us speak up together to improve services for Black people with MS. I have been involved with the Experts by Experience steering group as a volunteer since it started two years ago.

My role is to help involve a more diverse range of voices. Our group want to represent the MS community in real terms with their different voices and experiences.

In the words of Martin Luther King Jr: “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” (‘What is Your Life’s Blueprint’, 1967)

Very apt words for our MS community too.

Help make change happen

Will you share your experiences of MS to make a difference for everyone?

Join the Experts by Experience Network