Hidden- but should never be forgotten

Let us think about the more than 1 billion people in the world who live with some form of disability, of whom nearly 200 million experience considerable difficulties in day-to-day functioning and participating in society.

Persons with disabilities’ have lower rates of economic and labour market participation impose a higher welfare burden on governments, highlighting the costs of exclusion, which are estimated to range from 3 to 7% of GDP.

The human rights of persons with disabilities should enable each person to have full and effective participation and inclusion in society on an equal basis with others as laid out in the Convention on the Rights of Persons with Disabilities, which is close to universal ratification.

 We are all messy and not in neat or discrete boxes. But we often look through a specific lens in order to filter out the information we prefer not to see or consider or what doesn’t fit into our narrative. We go so far simplifying the rhetoric that it can become meaningless and we end up representing the rare rather than the common. These are those whom we can see and those who can shout the loudest.

Not everyone has a voice.

We can start off in research refining the groups we are looking at so much that we end up excluding and excluding groups from our research. This results in the people we are working with not always representing the many but only the very few and 'the rare'.

One challenge is the way we capture data and segment information results in specific views and biases. One example of this is studies undertaken relating to ADHD and ASD research which were predominantly more in males and hence we missed how girls presented. Another example is when we look at these studies often we did not even consider Developmental Coordination Disorder in the mix despite 25-70% of people with ADHD/ASD have DCD ( also known as Dyspraxia). If we didn't consider this.. how do we know the results are not missing some information or assuming outcomes were related to ADHD or ASD but could be different for those with ADHD and DCD... or ASD and DCD... or even ADHD+ASD+DCD....

Research relating to neurodiversity for many years has operated in silos. Much research only considered single conditions, when overlap was the rule rather than the exception. 

When we consider each person, the impact is greater for the person when there are intersections of multiple factors but often we consider aspects and can ignore key elements that may result in cumulative adversity.

Kimberlé Crenshaw, the US lawyer, and activist said:

“Intersectionality is a lens through which you can see where power comes and collides, where it interlocks and intersects. It’s not simply that there’s a race problem here, a gender problem here, and a class or LBGTQ problem there. Many times, that framework erases what happens to people who are subject to all of these things.”

Disability is not an afterthought for one day a year but a cross-cutting issue that can affect a person at any point during their life span. Disability intersects with gender, race, ethnicity, language, national or social origin, religion, age, sexual orientation, gender identity, or other status can result in multiple forms of exclusion, discrimination, and vulnerability.

This years’ focus on the International Day of People with Disabilities is pertinent as it targeted those with hidden disabilities. But we need to consider what this really means and why people hide or are hidden from sight.

Many people living with disabilities will be living in extreme poverty and are among the most stigmatised and marginalised people on earth. They may avoid being seen because of shame or are less able to voice their needs or have them recognised.

"Disabled people experience disproportionately higher rates of domestic abuse. They also experience domestic abuse for longer periods of time, and more severe and frequent abuse than non-disabled people. They may also experience domestic abuse in wider contexts and by greater numbers of significant others, including intimate partners, family members, personal care assistants and health care professionals. Disabled people also encounter differing dynamics of domestic abuse, which may include more severe coercion, control or abuse from carers. “

Vulnerable circumstances can mean that this has a doubling effect as it may further reduce the person’s ability to defend themselves, or to recognise, report, and escape abuse. Physical and environmental inaccessibility, stigma, and discrimination can additionally exclude and isolate that person.

We don’t know what we don’t know

How many other people with disabilities needs are hidden as they are seen as something else?

How many young girls of colour who are excluded from school have speech and language challenges or turn up somewhere else such as self-harming? The stats are difficult to find.

We do know that 'white boys' from privileged backgrounds are more likely to have their needs identified and are more likely to obtain an Education and Health Care Plan (a specific educational support plan set out in schools in the UK) and gain the support required. They often have parents that can navigate the system and know who and where to gain help. They have someone with a voice.

Nearly 1 in 3 children in care will have Educational Health Care Plans in England because of special educational needs but many of the 2 out of 3 in care who do not, will not have been assessed for neurodivergent conditions despite us recognising the much higher rates of neurodivergent conditions. There may be assumptions that challenges the children are presenting with must be due to attachment difficulties (which of course may be present). The challenge we have is that we often prefer as professionals the either/or response. We find it easier to make a dichotomous decision rather than seeing it is dimensional and need to consider the reality that it could be elements of both and working across professional silos and the need to see ‘whole children’.

What lens do we look through?

 Our representation and portrayal of disability in the media is often still somewhat limited. While the Olympics in London in 2012 did great things to showcase the huge skills of many people with a wide variety of disabilities the portrayal in the media often remains more focused on physical disability and less on different cognitive forms which may be less visible to others. There have been some amazing films in the last few years that have started to tell the stories about different people with Autism. While some of these are about females including Temple Grandin, they are predominantly featuring white people and often don’t tell a story that has strands of poverty or even success as well as disability. Alternatively, the stories try to inspire us and describe people with ‘superpowers’ rather than seeing the millions of people just trying to get to the end of each day who are struggling with gaining employment and maintaining relationships.

Missing data and missing stories-hidden from view

Statistics on LGBTQ+ people with disabilities in Britain are scarce but about 14 million Britons are disabled and almost 7% are non-heterosexual. Government data shows, suggesting an LGBT+ disabled community of nearly 1 million people. Few films have described the stories of people with disabilities and who also identify as LGBTQ+. Dan Barrett, an activist, describes himself as being gay, autistic, and having ADHD and the challenges and feelings of anxiety of ‘coming out’ in different ways.A recent film “S.A.M.”, sensitively tells the story of a budding love affair between two boys, both called Sam, one of whom has Down’s syndrome and had its British premiere at the Iris Prize LGBT+ Film Festival in Wales in October this year.

Out of sight and out of mind

Another group of people hidden from society is those without a stable roof over their heads. The statistics from England in 2020 on homelessness show the vast number of people who have either mental health and/ or physical health challenges and also show how many women this impacts.

If we look at the homeless stats and see where referrals are coming from, then we see another example of intersectionality gone wrong. 1 in 3 people coming from prisons are likely to be neurodivergent and we know who they are and when they will leave prison. Those coming from children's services are likely to have been in care and also have higher rates of neurodivergent traits but many may not have been diagnosed and continue to have unmet needs. Many will have anxiety and depression as well. We know when they will become an adult too.

Our professional boundaries maintain a lens of only one colour and do not bring the information together to consider people with disabilities coming from different backgrounds and settings. We favour those who shout loudest and are confident enough to be seen and heard.

What can we start to do in the UK and globally this year?

·     Raise awareness, raise awareness, and raise awareness at all points that messy is the rule!

·     Earlier identification in the school of support needs for all – using a biopsychosocial model rather than a narrower medical model.

·     Working together and not in professional silos so that we see every person as valued in society.

·     Use a common language across sectors including education, justice and social care so that when we all speak our words, that we all mean the same thing.

·     We also need to have the confidence to implement disability-inclusive development programmes to ensure hiring and retaining all disabled talent is at the forefront of our minds.

“The good we secure for ourselves is precarious and uncertain until it is secured for all of us and incorporated into our common life.”

― Jane Addams

Note: The Equality Act 2010 sets out when someone is considered to be disabled and protected from discrimination.

In the UK you are considered disabled if you have a physical or mental impairment which has a substantial and long-term adverse effect - beyond 12 months - on your ability to carry out day-to-day activities.

An impairment doesn’t have to be a diagnosed medical condition. If you don't have a diagnosis, you will still need some professional evidence to show your impairment has a substantial and long-term adverse effect on your ability to do day-to-day activities.

Person-first or identity-first

Using identity-first language, such as "disabled person" rather than "person with a disability", is preferred by lots of people for a very specific reason - it marks an important academic understanding of disability known as the social model and is the basis of the disability civil rights movement.