Disability, Culture and Policy

Talk given to students at Oxford Brookes University

I am here to discuss my lived experience of being a parent to a young person with learning disabilities and how I have struggled with cultural exclusion, social injustice, and policy failures.

A caveat: I am not here to speak over my son but as his mother and primary carer, I have the right to be his advocate. As Eva Kittay said, I have a moral duty to challenge those who may go on to influence policy that may have a detrimental impact on my son. I also have a moral duty to ensure that Harry has a fully supported life from childhood to adulthood.

So who am I? I am a parent, activist, campaigner, researcher.

I have three sons; my middle son has Down’s syndrome. He was diagnosed postnatally and thankfully, the news was broken in a sensitive way and not with the usual words “I’m sorry”. After all, there is nothing to be sorry about. Down’s syndrome is nothing to be afraid of and certainly isn’t something to apologise for.

1.

It is however, a condition that is rarely spoken about in my culture. I have Punjabi heritage and was brought up as a Sikh.

When Harry was born, there was no rejoicing his birth, which as a male child, would be customary in our community. Harry, however, was not looked upon as someone whose birth should be celebrated. Instead, I faced hostility and felt stigmatized. We are a community that is driven by perfection, that the next generation must do better than the last; our children must get a brilliant education and become doctors and lawyers. (Irony alert: my eldest has just started med school in London). So, anyone who can’t achieve these high standards is seen as a failure.

People would talk about me and suggest that Harry was a curse on me because I was an unmarried mother, (I have always been a rule breaker) that it was punishment for living with a white man and so much more. There was fear among friends that Harry’s illness as they saw it, could be transmitted to others. I was even prevented from seeing a friend who was pregnant as her grandmother feared that her unborn child might catch this ‘disease’. I felt completely shunned by a community that meant so much to me.

But I soon discovered that part of the problem was that there was no word for learning disabilities in the Punjabi language or even in Hindi or Urdu, all languages I can speak. I realised that without the correct language, it was going to be difficult to discuss disability or even to describe the condition my newborn son had.

The words that were being used were ‘simpleton’, ‘poor thing’, ‘slow’, ‘mentally ill’, none of which accurately described the chromosomal condition that my son had. He has an extra chromosome which affects all the genes in his body and will mean he will have a lifelong learning disability. With the help of my parents, I found ways of explaining his condition and more recently, helped write and translate a series of books about the lives of three young Asian people with learning disabilities. These were used as part of a project I was involved in which supported people from South Asian communities to have discussions about learning disabilities (Harrys book)

I must point out that I am very lucky that my parents were completely accepting of Harry as my aunt has learning disabilities, so our family had am understanding of it. My grandmother, a completely illiterate woman, loved Harry from the moment she set her eyes on him and became his biggest champion, telling her friends in the Gurudwara about him and how there was nothing to be afraid of. But this was incredibly rare in our community. Sixteen years on and I know families who will not talk about their child’s disability. I really wish we could change people's perceptions, but it seems we are still a long way off doing this.

2.

So, cultural exclusion aside, I didn’t realise that this was the least of my worries.

Getting Harry into school was the first hurdle. The local authority has a duty under the Childrens and Families Act and the SEND legal framework to ensure that Harry has the right support to meet his needs in school. It sounds as though this can’t possibly be hard to deliver right? Far from it.

The first challenge was getting an assessment of needs for your child. I was fortunate that as Harry has Down’s syndrome, it was a recognized learning disability and he was assessed at the age of 2. This is the only time I have been grateful that my son has a label as so often we focus on the label and not the individual in front of us. This was the easy part. Ensuring the local authority agreed to provide the extra support was the tough part.

I have fought to ensure Harry continues to receive speech and language therapy, a core part of his healthcare; fought to ensure that the hydrotherapy pool was available for him; and the latest battle which led to me going to the local media and nearly ending up in court, was ensuring Harry was able to get to school via transport provided by the LA. Every year, thousands of children are transported to school as they cannot travel independently. But every year, once those children turn 16, they are routinely denied transport. Government policy for students with special educational needs and disabilities, clearly states that local authorities have a duty to ensure that educational placements are available for children post 16, but they have the right to remove the transport which will take these children to those schools. Please make it make sense! Education policy for SeND children is a minefield for parents to navigate.

Every year, thousands of families have to go through the daunting and frankly quite frightening process of an education tribunal. Local authorities refuse to act within the law and meet the needs of children with special educational needs, resulting in parents spending ridiculous amounts of money in legal fees to fight the local authority, who in over 90% of cases, LOSE in court. Parents should not have to fight to get an education for their children. It may well be that as a society we have progressed in that learning disabled children have a right to an education now (they are no longer seen as ineducable), but we don’t make accessing that education easy. Another battle.

I am fortunate, however, that I understand policy and law in this area as I have spent the last 16 years making sure I have read every policy document and legislation that will impact my son at some point in his life (I have mountains of paperwork for Harry!). There is apparently a name for mums like me… I am a warrior mum. It’s not a title I want, but it’s an apt descriptor! Sadly, though there are thousands of families who are let down by the system as they just don’t know how to navigate it and are often scared of challenging those in power. Thankfully there are many charities out there who support families like mine to make sure they are getting the right support for their children. SEND education is hugely underfunded, special school places are limited, mainstream schools can’t always meet need and LA’s fail to work within the law.

And for families from ethnic minority groups, the struggles are even harder. Not only do many families face stigma from their own communities, but many are also then left without support from their child’s school or the local authority. I can’t imagine how they even begin to navigate the system.

3.

So, while I was fighting my local authority, I was also fighting against bias from health professionals. As I mentioned earlier, I was incredibly lucky that my son’s diagnosis was not given to us in a negative way. None of the language was negative and instead I was told that he would need lots of support but that I should bring him up in the same way as I was bringing up his older brother. But I am in the minority here. Most parents of disabled children are told by medics, that “they’re sorry”. This negative language can have a hugely detrimental affect on families in their journey with their child. When your child is always spoken about in the deficit model, it feels utterly dehumanising.

One incident I recall is when Harry was attending his ENT appointment. Harry was born with severe glue ear which affected his hearing so hearing test and hearing aid appointments became the norm for the first few years of his life. At one particular appointment, I had asked the Consultant if there was a possibility that Harry could have grommets fitted (tiny metal tubes inserted into the ear to release the fluid build up). His response was (and this still haunts me), “Why would you bother? He has Down’s syndrome so being able to hear won’t improve his life”. And having said that, he calmly turned his back to me and proceeded to talk into his Dictaphone. I left the hospital in floods of tears, unable to comprehend how a medical professional could speak to me that way and to reduce my son to something that didn’t need medical support. Of course, I put in a complaint and was duly sent a letter of apology. I did finally get grommets for Harry but had to do my own research and found a Consultant in Manchester who agreed to operate on my son. He was a changed child and the joy on his little face when he could finally hear my voice was something I will never forget.

But I shouldn’t have been made to feel as though my son was worthless. I shouldn’t have had to do my own research and find another doctor who could help. There have been other examples of doctors who have dismissed my concerns for my son, but thankfully, as he is getting older, these incidents are few and far between. I hope that improvements have come about as a result of the NHS implementing measures around learning disability, but I suspect that some of the changes we have seen are down to me being the ‘warrior’ mum and not letting any doctor treat my son with indifference.

4.

These have been some of my personal reflections, but I would like to talk about some of the broader issues faced by my son and learning-disabled people in general.

People with learning disabilities continue to face health inequalities. There is no national strategy for learning disabilities and policy remains fragmented and I would even go so far as to suggest that much of the latest policy measures are performative and do not tackle the underlying issues that cause these health inequalities to persist.

Evidence given at the recent Covid 19 Inquiry highlighted the health inequalities faced by people with learning disabilities and the inequity in access to good health care. As Prof Tom Shakespeare, an expert witness, pointed out, people with learning disabilities have as many health conditions at age 20 and over as the rest of the population at 50.

Life expectancy remains much lower than that of the general population. Targets for annual health checks, a crucial health measure which often picks up medical issues which may go unreported, are still not being met, resulting in continuing poorer health outcomes.

But major reports on the health of the nation, such as the Marmot Report, Ten Years On (2020), failed to consider people with learning disabilities. There are more than 1.5 million learning disabled people in the UK, and to exclude them from reports such as this is really worrying. As we know, academic research feeds into policy making so we must ensure everyone is included so that any policy which is developed, is targeted, effective and impactful.

My own research for my Masters dissertation, examined the exclusion from the research agenda, of people with learning disabilities from ethnic minority communities,. Another area where researchers must be more inclusive.

5.

There has, however, been some recent progress in this area.

A report commissioned in 2023 by the Race and Health Observatory, in collaboration with the Race Equality Foundation and Prof Chris Hatten from Man Met Uni, explored the health inequalities faced by people from ethnic minority groups.

They wrote that “Literature, which has spanned over two decades, has acknowledged that the intersection of ethnicity and disability, two marginalised identities in society, results in compounded discrimination. Such discrimination exacerbates inequalities in relation to health outcomes and healthcare among people from ethnic minority backgrounds with a learning disability. These existing disparities are due to the social determinants of health, which are further fuelled by discrimination, racism and marginalisation. In turn, people with a learning disability from ethnic minority backgrounds experience poorer access and experiences of healthcare services and poorer health outcomes.”

Prof Hatten specifically explored the lack of inclusion of these groups in policy which was aimed at people with learning disabilities. His findings came as no surprise to me as he found that most policy did not mention people from ethnic minority communities.

Why this was not a surprise to me is because I have been involved in campaigning for better services for people with learning disabilities and to ensure that voices of people like me and my son, are included. I have found, however, that as a person from an ethnic minority, it is very difficult to have my voice heard.

A piece of legislation has recently been passed, entitled the Down Syndrome Act 2022. I campaigned against it. I expect you are probably shocked at this as I have a son who has the condition. For me, if you want to improve the lives of learning-disabled people, then you should improve everyone’s lives, regardless of the diagnosis they have. We cannot place my son on a pedestal because of his condition and simply disregard the needs of his friend who has a different condition but has far greater needs. (I co-wrote a piece on this with my friend Stephen Unwin, also a parent to a severely learning disabled young man).

It was brought as a Private Members Bill by Dr Liam Fox, former Conservative Defence Minister. There was a group of 16 people who wrote the original Bill and it came as no surprise to learn that they were all white, middle class and had connections with the current ruling party! To bring some credence to their argument that people with Down Syndrome needed more specific support than other people with learning disabilities, there wrote an 80-page evidentiary summary paper detailing issues in maternity care, education, social care and the job market. But they failed to make any mention of race, culture, or ethnicity. According to this group, people like my son did not exist! It felt as though he was an alien being, an anomaly, an outsider. Not only was he rejected by people from his own ethnic background, but he was also being rejected by the Down’s syndrome community.

This also happened with the Oliver McGowan Training in Learning Disabilities and Autism, a training programme developed after the preventable death of a young man who was autistic and had learning disabilities, where none of the training mentioned people from ethnic minority communities. There wasn’t even a person of colour amongst any of the people who delivered the training.

These oversights, or more accurately, exclusions, are dangerous!

They are dangerous because they are othering my already othered son. For someone who is already marginalised due to his learning disability, he is further marginalised by his ethnicity. It is often described as double discrimination, as if one isn’t bad enough! If people like my son are not visible in campaigns, then they become invisible in the communities where they exist and they are ignored. This simply has to change.

They are also dangerous because by making my son invisible, his health needs cannot be met and in terms of health inequalities, the life expectancy of a person with severe learning disabilities from an ethnic minority community is 34 years. Take a minute to think about that.

His brothers have a life expectancy of 80 years (data extracted from the 2011 census). As a mother, this is heartbreaking and feels like yet another injustice for my son.

6.

This sense of othering seems to be evident everywhere.

I attended a conference this week, on advocacy, and was listening to the speaker at the final workshop when she exclaimed that she often had to remind herself that human rights must be upheld for people with learning disabilities. As one of only a handful of parents there, I raised my hand and asked her if she ever had to be reminded that human rights are a normal part of OUR non-disabled lives? She was taken aback but it came as a reminder to me that yet again, my son is seen as different and that his human rights are forgotten about, even by people who are supposed to be advocates for him and other learning-disabled people.

So often this othering is seen in the language used when talking about the lives of people with learning disabilities. So often I have heard people say, Harry should access the community with his peers, in other words, go out with his friends. Why can’t we just speak plain English? So ghastly and dehumanising.

7.

This brings me on to the social model of disability and the work of disabled peoples organisations. Much of the changes that have been brought about in policy and legislation are due to the campaigning and activism by disabled people themselves. The social model of disability was developed by Oliver who stated that people are disabled by the society they live in and not just their impairment. This led to changes in access requirements for people who use wheelchairs, for people with guide dogs to be able to take them into public places. However, as much as the DDA which is now the Equality Act, proved to be groundbreaking, disabled people are still facing barriers in their everyday lives, not only physical ones but barriers in accessing finances, jobs and housing.

My views on the social model of disability is that it does not fully take into account the needs of people with learning disabilities. My son does not need a ramp but he does need information in a format he can understand. This could be in easy read or information which uses symbols and words. This is something we have to constantly ask for and I’m afraid the model fails my son and his needs as a learning-disabled person.

I am going to suggest something which you may find controversial. I think there is a hierarchy in disability and that people with learning disabilities are the bottom of the pile. The Down Syndrome Act was a clear example of how a hierarchy is being created even within learning disabilities; Harry at the top (stick him on a pedestal as he has an extra chromosome) while everyone else sits at the bottom, waiting for some policy crumbs to be thrown their way. Harsh but true!

Learning disabled people are often told to defer to physically disabled people who will speak for them. Why not the other way around? Why can’t Harry take the lead? Again, I have witnessed this many times and it needs to change.

The recent furore over Rosie Jones and her use of the R word is yet another example. As a physically disabled person, she could have used the word ‘spastic’ in the title of her show, but she used the R word, which we know is a derogatory term used against learning disabled people. My own thoughts were that she used the word as it is the absolute lowest form of life. Why would you want to be called a ‘retard’? Why would anyone want to be learning disabled? Her defence of her use of the word really didn’t stand up to scrutiny.

There is often a dividing line in campaigning too, where learning disabled people are left on the sidelines. Many of the campaigns I have been involved with have failed to receive the support of physically disabled people.

I have campaigned for nearly two years to ask the government to make it easier for people with learning disabilities to be able to access their child trust funds. The campaign has received coverage from the mainstream media but when I approached some prominent disabled journalists to cover the story, I hit a brick wall. There was zero interest and this continues to be the case. We did however get Martin Lewis to support our campaign and we are keeping up the pressure on the government. Again, this is another injustice faced by my son. His older brother was able to walk into the bank, sign a form and get his hands on £8000 which I had saved for him since he was born. By the way, I have no idea how he intends to spend it but I suspect a trip to Ibiza may be on the cards!.

Harry however, due to the mental capacity Act, would have to demonstrate that he has the capacity to make a decision about his money and if he can’t, I will have to go the Court of Protection, pay a fee of more than £500, fill in numerous forms and finally access his OWN money. When a spokesperson from the MoJ was asked to explain why parents were being made to go to court, the response was that they were aware that a small amount of people may spend the money fraudulently (approx. 5%) so they needed to ensure measures were in place to protect those young people. Punishing the 95% who won’t misspend the money is yet another example of how families of disabled people are treated.

Many carers give up careers to make sure they can support their loved ones to live a good life, not to eat up their welfare benefits.

I was the UK and European sales manager for a global steel producer. I managed million pound budgets and held board meetings with CEO’s from some of the biggest car manufacturers in the world. I held my own. But now I can barely get through a school annual review without crying.

Carers are exhausted, unsupported emotionally and financially but we carry on.

8. Further injustices.

During the pandemic, it became evident that disabled people and people with learning disabilities were horrendously let down by the government. They were an afterthought as usual. There was no easy read information and if there was any, it was not easily accessible. For people from ethnic minority communities, there was very little information translated into other languages. So much was overlooked.

When the vaccine rollout was announced, people with Down’s syndrome were recognised as being at risk of dying if they contracted covid, however, the government refused to add them to the priority vaccine list. I joined the campaign with people like Jo Wiley (Radio ! DJ who has a learning-disabled sister) to get our loved ones the vaccine. I appeared on tv and radio stations and really had to spell it out that if my son contracted Covid, he would fall ill but also that he would not be able to describe his symptoms. All of us in this room would be able to clearly tell if they were becoming breathless or were experiencing other symptoms, but when someone has a severe learning disability, we as carers have to second guess. Covid was not something I wished to second guess for my son. He eventually received his vaccine but again, this was another unnecessary battle.

This week, in the Kings Speech, there was much anticipation by many people from the learning disability community, that the changes to the Mental Health Act which were promised in 2017, 2019 and again in 2021, would be announced as part of the governments agenda for this session of parliament. However, it has been scrapped. Why were these changes so important for learning disabled people? The government had agreed that they would amend the section of the Act which stated that people with learning disabilities and/or autism could be held under the Act, simply because they have a learning disability. There is no other group of people that can be held under the Mental Health Act because of their disability, race, gender, sexuality.

Campaigners had long asked for this to be removed and were hopeful that this would be announced. But again, the needs and rights of learning disabled people have been kicked down the road. There are currently over 2000 people with learning disabilities and autism being held under the Mental Health Act, who should be in the community, receiving care and support rather than being over medicalised in institutions. It makes me wonder if we have moved away from institutionalising disabled people? I suspect we haven’t.

It seems to me that keeping people like my son in the community where they belong and more importantly where they wish to be, is an unbearably difficult task! Harry is currently ‘transitioning’ towards adulthood and we should be receiving support around his wishes for the future. But there is nothing there for him. The local authority simply wash their hands of young adults like him, and yet again, it is left to parents to make arrangements for their child’s future.

We are looking at residential colleges as a possibility and are selling the idea to him as this being a university type experience for him (laughable really as Universities would never entertain the idea of having learning disabled people amongst their student population (rightly or wrongly I guess).

But even the thought of sending him away during term time fills me with dread. The horror stories of abuse in care homes and residential settings are never far from my mind. It is a decade since the Winterbourne View scandal when learning disabled and autistic young people were subjected to the most horrendous abuse. Some people went to prison after successful prosecutions, but the sad truth is that we continue to hear these stories time and time again.

Just the other night, Channel 4 ran a news item on the abuse of a young autistic man in a mental health setting. The impact of the physical and mental abuse was so severe that he is now nonverbal and uses a wheelchair for support.

Yet there is no national outcry.

And this is when families like mine are torn between keeping our loves ones at home and essentially depriving them of their independence or sending them off to be cared for by others and live in the constant fear that they may be hurt and abused.

Disabled people face hate crime which often goes unreported. Learning disabled women are more likely to face domestic abuse than any other group of women. The list goes on.

The welfare system which provides support for disabled people is often criticised for encouraging ‘scroungers’. A recent article in the Telegraph asked people to use an online calculator to work out how much of their tax was going towards ‘welfare claimants’. This demonisation of the disabled is not new. We saw it in German Nazi propaganda claiming that it was too costly to support a disabled person. As we know, this resulted in Aktion T4 which led to the murder of hundreds of thousands of disabled and learning-disabled people. Never again, please, never again.

9.

I know this all sounds incredibly grim but the reality is that the lives of learning disabled people are still incredibly hard. There needs to be a cultural change where people like my son are seen as human just as everyone in this room is.

Harry’s life chances should be equal to those of his siblings. His human rights shouldn’t be an afterthought.

10.

Now let’s end on a high!

Harry is the centre of my family and is much loved by everyone who meets him. He is also a Bollywood hero and loves to dance for anyone who will let him. He recently danced at a celebration of the Commonwealth Games. He may not be able to read and write proficiently or even tie his shoelaces or remember the name of the street where he lives, but he can sing (rather terribly and loud) and dance, and light up a room with his smile and his infectious laughter. Surely these are the things which we as a society should celebrate, instead of fearing disabilities.

Harry is loved by those that know him and we have built up a support network for him which hopefully will be there for him when I am no longer around.

As a society, we need to remember that we are all human and that my son has every right to be here and to live a good life in the community he belongs in.

Thank you for listening.

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