People with learning disabilities from ethnic minority communities.

Presentation for Learning Disability England Online Conference

Policy and Good lives.

I would like to talk today about some of the issues faced by people from ethnic minority communities who have a learning disability, their families and some of the wider issues around policy making and campaigning.

I am mum to three teenage lads and they are of mixed heritage; their dad is white Northern Irish and I am a British Asian.

My middle son Harry has Down’s syndrome and is learning disabled. He is sixteen years old and currently attends a specialist school where he is doing land studies, which means he comes home filthy, having spent the day in a muddy field! He loves it though! He loves singing and dancing and regularly entertains the family with his pretty amazing Bollywood dancing. He clearly doesn’t get that from me! He’s living a pretty good life. Things, however, are not always so brilliant for kids like him.

According to the LeDeR report and the recent Race and Health Observatory commissioned report, ‘We Deserve Better’, the median age at time of death for mixed ethnicity people with learning disabilities was just 30 years old. Compare this to the white population, and their age was found to be 62 years. Both are well below the age for their non-disabled peers which is around 80 years. Harry is now 16 so according to these figures, he is already potentially halfway through his life.

For a parent, this is the most shocking detail to have come out from what was already a damning report about the experiences of people from ethnic minority communities. I have always been aware of the lower life expectancy, but I didn’t expect there to be such a dramatic difference between ethnic groups.

Hence the reason for discussing this today. I understand that we should be focusing on all people with learning disabilities, and I have always campaigned for support for all, but we must acknowledge that when the data shows us that a small percentage of people with learning disabilities have such poor outcomes, then we must speak up about this. I have been challenged in the past for focusing on my son’s ethnicity, but I believe that the recent LeDeR reports, and the Race and Health Observatory report have given me the right to broach this topic and ensure that as a community, we are working to ensure that ALL people with learning disabilities have good outcomes and can live a good life.

It is also important to note that life expectancy among non-disabled people from ethnic minority groups are also much lower than their white peers. The difference, however, is that this is explored and included in research, for example the Marmot report on health inequalities. Researchers and policy makers DO attempt to tackle these inequalities (although some might say that if we look at the pandemic, they failed miserably), but in the learning disability community, there is a tendency to ignore these groups. Yes, we are mentioned (sometimes) but then nothing is done about the findings. So, by simply ignoring us, remember, we are not hard to reach, we are creating problems further down the line.

I believe that everyone should have a seat at the table and can express concerns about groups that are further marginalised due to their ethnicity.

From my own experiences, I rarely see or hear ethnic minorities mentioned in campaigning. A prime example of this was the campaigning around the Down Syndrome Act which received Royal Assent nearly two years ago. The campaign posters featured a sea of white faces and only after fierce criticism did they include a couple of people who weren’t white. Tokensim is easy to spot! The campaigners wrote a summary paper of evidence where they looked at the issues faced by people with Down’s syndrome. It was eighty pages long. It failed, however, to mention race, ethnicity, or culture. Surely if the Act was to be fully inclusive, there should have been a mention of the poor outcomes for people with Down’s syndrome, who belonged to ethnic minority groups. Therin lies the problem; you cannot claim to be representing everyone, if you leave out groups which are on the margins due to other parts of their identity. Intersectionality must be considered as all the evidence suggests that certain elements of a person’s identity will have a different impact on their life outcomes.

This lack of diversity continues in charities at board level, and many grassroots charities from ethnic minority groups, struggle to get funding and if they do, it tends to be really short term, therefore reducing their ability to support communities and take part in campaigning and lobbying.

There are also institutional challenges that need to be overcome.

The ’We Deserve Better’ Report examined four pieces of legislation (Carers and Disabled Children Act 2000; Children and Families Act 2014; Care Act 2014; Down Syndrome Act 2022) – and found that none of them contained information or specific policy direction relating to people with a learning disability from any ethnic minority group.

The recent Covid Inquiry included evidence from senior civil servants and government advisors who spoke about the lack of diversity among policy makers. They revealed that women’s issues such as correct PPE and domestic abuse during the pandemic, were widely ignored and that the lack of understanding of ethnic minority communities, led to catastrophic decision making, which ultimately led to a greater number of deaths of people from these communities. When we consider people with learning disabilities during Covid, it was clear that they were more likely to die from Covid than the general population. Once again, we can see that this lack of diversity within policy making can lead to the needs of certain groups being ignored.

So, if indeed, our civil service is lacking in diversity, then I believe that we as a learning-disabled community, through self advocates, supporters and family members, must demonstrate OUR diversity of people who have different experiences, backgrounds, cultures and beliefs, but also that we are all pulling together to ensure that NOBODY is left out.

When I undertook my own research around annual health checks, there were few voices from people with learning disabilities from ethnic minority groups and I had to use Harry’s experiences to challenge or support the research findings which were already out there. We need to ensure that researchers are also including more people from these communities so we can influence policy making and ensure it is fully inclusive. It is also essential that reports such as the ‘We Deserve Better’ report are shared amongst the communities they are written about. I think charities and grassroots groups need to have more involvement in this as none of my friends from my Punjabi community who have family members with learning disabilities, had heard of the report. I was able to share it and discuss the findings, but this should be happening more widely.

Some people may question why me? Why am I speaking out about this? The truth is, it doesn’t matter who is speaking, if they are using their voice to make a difference. We all accept the brilliant slogan used by disability activists, “nothing about us, without us” and I think we should be using it for ethnic minorities too, although I would argue that we need more about us first! I would love to see more people from these communities, campaigning with and for our learning disabled loved ones, and I hope that by seeing and hearing me and my son, more people will come and join us in campaigning for better lives.

But we need to also explore why so few people from what are sometimes described as minoritised communities, come forward to join in campaigns or research. This goes much deeper than not being interested or a lack of awareness of current issues. There are deep rooted problems within some ethnic minority communities like mine.

I have always been open about the way my Punjabi community made me feel that I did not belong, that my child was a burden and should be kept hidden away. When your own community rejects you and your child, the trauma of that rejection can be so easily transferred to the wider world leaving people feeling isolated, powerless, and unable to take part in campaigns and lobbying. There is still so much that needs to be done to destigmatise people and this is where grassroots groups play a part. If we can find people who can go into community centres, places of worship, recreation centres, community kitchens, and speak to families like mine, there is a greater opportunity for those families to then engage with the wider debates around improving the lives of people with learning disabilities. More people might engage with LeDeR, they might feel more confident challenging health inequalities, tackling issues in their own areas and taking part in research.

We also need to ensure that everyone is culturally competent, and that includes, doctors, nurses, social workers and carers. Harry has been brought up in a family where our Punjabi culture is incredibly important, and I must ensure people understand how it affects him. I worry that a lack of cultural competence by people who will care for him, will leave him feeling isolated and without anyone to turn to. One of my greatest fears is that if we continue to ignore the needs of people like my son, who, right now, I can speak up for and support, what on earth will happen when I’m not around? If there is no interest in his culture, his love of Bollywood, his enjoyment of eating food at the Gurudwara, or his Nani’s homemade stuffed breads, then what happens when someone else needs to support him? Will they just give him fish and chips, or will they bother to ask him what he wants or likes? These fears are universal for all families of people with learning disabilities who may not be able to advocate for themselves, but Harry’s cultural needs are too often ignored.

We can change things though, by becoming culturally competent but also by reducing the stigma faced by people from minoritised communities and empowering them to speak up about their cultures and sharing that knowledge and expertise so everyone can live a good life.

I have had my own struggles with the cultural aspects of our family life and how Harry might be treated differently because of it but I have started to find people in my local gurudwara who are supporting me. I have found new allies amongst my parents’ generation who want to learn more about learning disabilities and who want to remove some of the stigma. But we need more support from outside our communities. I have some brilliant white allies in the learning disability community who I know will support me whenever I need it, but this is not a universal experience for people from ethnic minority communities. I want these allies to go a step further and start talking about and tackling the issues that are faced by people with learning disabilities from ethnic minorities.

There is no doubt that there are many factors which lead to poorer outcomes for minority groups, and some stem from within our communities themselves, but we really need support from the majority white community. We share universal hopes and fears so a deeper, more connected allyship is required.

So how do we improve our knowledge of the experiences of marginalised groups? As policy makers use evidence generated by the third sector and academia, I would like to offer some workable solutions for the inclusion of people with learning disabilities and their families not only in campaigning and lobbying but in research projects. All of this will help shape and influence policy which help to improve the outcomes for all.

·      Grassroots groups should be actively sought out within marginalised communities.

·      Raise awareness of learning disability issues through workshops or through books such as ‘Ordinary Lives in Translation’ created by Changing Our Lives, featuring my son Harry. These were translated into three South Asian languages and distributed in places of worship and community groups.

·      Look for people in setting other than support groups. I found people in my local gurudwara (place of worship for Sikh people) and in the local community centre.

·      Focus on external exclusionary factors and the internal issues of stigma within these communities. Mothers especially need more support and feel isolated from others.

·      Do not assume that there is always a large family to support the person with learning disabilities. Multigenerational families feature less and less in these communities.

·      Encourage those of us who are already speaking out, to engage more with other local communities. When we are seen, people are more likely to engage, ask for support, and take part in research which will influence policy making. We can help to remove the stigma around learning disabilities and empower people from our communities. Being invisible is not an option.

·      We all have a part to play. We should not be picking who we choose to support. A good life is for everyone.

I suppose my plea is not only to my white friends, but also to my Asian community, to come together, to support each other, to give a voice to those who are afraid or those who feel they won’t be listened to. Our goals and aims are the same, regardless of our race or ethnicity and we must do better to ensure that everyone can thrive. We are all human and as a human collective, we can bring about change which will benefit everyone. As the 2023 report said, we deserve better.