UK MS charities say they represent all people with the disease.
But how can they – with so little ethnic and racial diversity at the top?
Take a look:
“Representation is important,” says Dr Sharmilee Gnanapavan, consultant neurologist at Barts Health NHS Trust. “When people don’t see this, they’ll likely bypass it.”
And that representation – judging from the photos and bios of the above – is Caucasian, middle-aged, with higher-than-average household income and education. This would be ideal if the 130,000 plus people with MS in the country were all like this, but they aren’t.
And yes, I know I’m hardly the best person to write this article – but I think it’s worth starting somewhere.
Take race. MS was traditionally seen as a “white person’s disease.” While it is still more common in Caucasian, studies show south Asian and Afro-Caribbean people born in high-risk countries – like the UK – have the same risk of developing MS as the native population.
As for data on MS prevalence and incidence in different ethnic groups across the UK, no-one knows for sure, as GP data sets are not reliable, according to Ruth Dobson, consultant neurologist at Barts Health NHS Trust.
But wait, I can hear some of you say. Does it matter – to put it crudely – what colour someone is?
I believe it does. In the past year, the Black Lives Matter movement and the Covid-19 pandemic has exposed the disproportionate racial and health inequalities faced by Black, Asian and minority ethnic (BAME).
On a smaller scale, research has consistently shown how a non-diverse leadership – some call it institutional racism – has a negative impact on organisations.
For one thing, it leads to group-think. “The decisions you make are influenced by your background and if everyone is drawn from the same one, there are no dissenting voices. The group becomes unconsciously myopic,” says Dobson.
It also means a dominant body makes all the decisions on the charity’s direction, strategy and distribution of grants and services. Specialised needs are overlooked in favour of a “one size fits all” approach.
This is hardly ideal when it comes to MS. Recent studies have revealed unique differences in how the disease impacts minority groups. For example, we know Black people with MS are more likely to have a faster, more disabling disease course and are more prone to visual and walking problems (time to cane 6-10 years faster vs their white counterparts).
Third, if a board isn’t diverse, it risks a disconnect between itself and the community it claims to serve. People not represented feel they are not welcome, belong or valued.
Nobody is more aware of this than Jamaica-born Norma MacFarlane, founder of the Shane Project – the only charity in the UK providing support, empowerment and education to Afro-Caribbean and ethnic minority people with MS.
MacFarlane set up the charity in 2002 after both her UK-born sons were diagnosed with MS: one has relapse-remitting MS while her eldest, Shane, was diagnosed with primary progressive MS, in 1993. He has since passed away.
For years, she tried to get involved in the MS community except: “I would go into meetings and feel left out.” So she decided to set up her own charity where everyone would be welcome.
MacFarlane still keeps up her MS Society membership, but thinks the charity leadership could work more at being more inclusive.
This is something Rahat Mahmood, 38 and who has MS, strongly agrees with. She would also like to see a mix of people – including those from South Asia – at the heart of the charities.
She believes this would raise awareness of the disease among UK South Asians – while helping to dispel the prejudice and stigma surrounding it. “People in my community – India and Pakistan – think if you have MS, it’s because your parents have done something wrong or they think “God is paying you back.”
She knows there’s an Asian MS group under the umbrella of the MS Society, that offers information in different languages and produces a quarterly newsletter, but says this isn’t enough. “We need to be involved in making decisions.”
For Kadra Abdinasir, organiser at the campaign group #CharitySoWhite, this is all too familiar. She points to a 2017 Charity Commission report showing 92% of trustees on charity boards and 95% of charity chief executives in the UK are white.
“For years, the charity sector has hidden behind good intentions,” she says. This must change, she believes, and it starts with the top leadership having conversations – no matter how uncomfortable – about power and privilege.
Abdinasir would like to see charities putting as much emphasis on ‘lived’ experience as professional expertise when it comes to choosing trustees. This means seeking out people of colour; LGBT+ people and those who have experienced financial hardship or are on disability benefits.
To be fair, both the MS Society and the MS Trust have acknowledged they need to do more when it comes to equality, diversity and inclusivity (EDI) at their organisations. The MS Trust has been carrying out workshops and training on EDI and changed their recruitment process to attract more diversity.
As for the MS Society, in December it members chose three new trustees – including two from BAME backgrounds. The charity also says it is aiming to build stronger relationships in the MS community and also are putting together a new EDI strategy, according to Philip Anderson, Head of Policy and Equality, Diversity and Inclusion (EDI) Lead at the MS Society.
This is all welcome news. A more diverse charity is a more successful one. Everyone wins.