Volunteering to create better representation
My first contact with the MS Society was when I got in touch to ask how they were going to best represent Black people in the future
I personally didn’t feel like their presentation was good enough. The advertisements, the studies and social media highlights seemed to only show one narrative and I felt they could do better.
They responded to me honestly and openly about the faults and what they intended to do in the future.
Sharing my story for Black History Month
They asked me if I’d like to share my personal MS narrative for Black History Month. I was happy to do so, to highlight the racial prejudices and issues I faced along my own journey.
I wanted to create more cultural diversity and to highlight the many issues faced by someone of colour with multiple sclerosis.
The MS Society was very supportive of my blog and my personal story. They never once tried to edit my authentic feelings. However when the story went out there was some racial backlash on Facebook. This didn’t really bother me much and I honestly expected it to some degree. I feel people generally attack what they don’t understand or don’t personally experience.
I felt some people thought I was trying to say the Black MS narrative was harder than everyone else’s. This was so far from the truth. I was only trying to highlight how unique my experience was as a person of colour with MS.
Helping create a welcoming space for all
I sent the MS Society a follow-up email to ask how I could further assist in creating a better, more welcoming and widely represented space for all.
My timing seemed to be great as it was in line with the current work the MS Society is doing on improving EDI (equality, diversity and inclusion). The Volunteering Transformation Manager reached out to me and asked if I would be happy to help her decide how to best do this research.
It was really important to me that research into this area was done correctly, so the people conducting interviews and collating the information could create change and action in the future.
Asking the right questions
I worked closely with the team to help create questions that represented the needs and concerns of the community, especially those of colour.
I really wanted to make sure whoever took on the job had our best interests at heart. I did this because it’s important to me that we are visible and heard.
That in the future MSers wouldn’t have to go through what I went through. And would have a better source of information and view of what the community really is.
I believe our community as a whole, regardless of background and colour, will benefit from better data and from more voices from multiple backgrounds being seen, heard and taken into consideration.
Volunteering gives me purpose
The most positive thing for me about volunteering is that I feel I’m helping make a real difference. It gives me a purpose on my journey and allows me to use the voice I never knew I had.
I’d like to keep helping to make sure the needs of the wider community are heard and seen in the future and ongoing. That we keep on track and the needs of the whole community are met.
By hearing everyone’s voices and collating the experiences, needs and stories of all we’ll create a better narrative and information source. So that we can have better resources and hopefully better treatments that take all ethnic backgrounds into consideration as well as genders.
I’d like to continue to help create more interactive fun and visible modern campaigns. That reflects the future community as well as the current community.
For anyone who wants to volunteer with the MS community just simply reach out.
No matter how wild an idea you have, share it. You’ll be surprised how much of an asset you will really be.
Volunteer with us
Whether it’s offering support, raising money, managing social media accounts or volunteering for the MS Helpline – there’s lots of ways you can help us be there for everyone with MS.
Will you join us?
