The Social Model of Disability is one of our main values here at Disability Wales. We work tirelessly to promote the understanding, adoption and implementation of the Social Model throughout Wales.
We know that everyone’s relationship with the Social Model will differ and we believe it’s important to highlight the experiences of those who have and are working to implement the model into their own lives. That’s why we have invited Monique Craine of NeuroDivergent Matters to pen this blog post for us all about Neurodiversity and the Social Model.
Take it away, Monique.
Neurodiversity and the Social Model of Disability
For this article, I chose to take a lived experience approach to writing about how the Social Model of Disability impacts neurodivergent people.
When I talk about Neurodiversity, I am referring to the massive variations in human cognitive functioning.
All humans are part of a complex neurodiverse species. This means we all have our quirks and differences in the way we learn, think and behave.
These are often shaped not just by our neurology but also from our life experiences and cultures.
Those of us who neurologically diverge significantly from the typical majority in reaching our developmental milestones are the people I am referring to as neurodivergent.
The term neurodivergent is inclusive of diagnoses such as autism, Attention Deficit Hyperactivity Disorder (ADHD), dyslexia, dyspraxia/developmental coordination disorder, Tourette’s Syndrome and much more.
One could argue that anyone who is not neurotypical is by default neurodivergent. These differences in neurocognitive function usually mean that we have hidden differences which, if not accounted for, can lead to disability.
Neurodivergent people don’t just differ in the way we think, but in the way we move, behave, and interact with others.
If we have the cognitive ability and energy to mask our differences, we do. Many of us do this so as to attract less negative attention.
When we reach out for help, we are often met with people who think that we should be able to behave and speak or read like everyone else.
No matter how ‘in the right’ we are, we will have been told we are in the wrong because our tone is inappropriate. So, instead of reaching out for help, many of us learn to mask and further hide our difficulties from a very young age. This can lead to developing mental health conditions.
Masking makes us suppress our own bodily needs, it makes us have to concentrate on looking like we can cope with things we find distressing or even painful. So it is no surprise that many neurodivergent children become adults with many mental health difficulties.
Due to the mental health conditions we develop over time and the barriers we experience when accessing society, many undiagnosed adults eventually break down to the point where they seek medical intervention because they don’t know why they work the way they do.
Many of us think we are broken for many years before we are even put on diagnostic pathways.
Under the medical model, we are often forced to obtain diagnoses before any accommodations are put in place to help us learn to circumnavigate the many barriers living in these neuronormative environments bring.
The Medical Model of Disability
Many people think of disability through a ‘Medical Model’ lens.
This means people see disability as being caused by a person’s conditions or impairment. As the medical problem is seen as being within an individual, all society can do is hope for a medical intervention which can cure or at least reduce symptoms for that person.
Under the medical model, we internalise our difficulties and make them about the individual and how they can’t do things other people can.
When we look at disability through this medical lens, we effectively blame a condition or impairment for all the difficulties a person might face. This is fine when someone has a common cold or a broken leg, we want them to take treatment to minimise their symptoms and wish them a speedy recovery before expecting them back to school or work.
The medical model does not work so well for those of us whose conditions are life long, for whom there is no cure as such, nor is it appropriate to talk about neurodivergence this way.
Neurodiversity and the Medical Model
Neurodivergent people are often told at diagnosis that they are just wired differently and will be like this all their lives. There is no cure, no treatment which would stop an individual from being neurodivergent.
Neurodivergent people function differently throughout their lives and need to learn strategies to manage ‘their’ difficulties, but they will never stop being neurodivergent.
Under the medical model, a neurodivergent person like myself would need to be diagnosed and then request reasonable accommodations under the Equality Act 2010. That person would then have to prove (sometimes in a court or law) they were ‘disabled’ according to the Equality Act definition.
Using a medical model lens fails neurodivergent people entirely because once diagnosed, we are often told our neurotype is just the way we are, there are no medical treatments that can turn us into neurotypicals. If there were, many of us would not choose to take it because, despite the difficulties we experience navigating neurotypical landscapes, we can have strengths in the way we think too.
Our neurology is just the way we function, it is not something we have been struck down with, it isn’t degenerative, it isn’t good or bad, it just is what it is, and it’s all we have ever known.
For many of us, our post diagnostic support was being told we are different and just need to work much harder than most.
If we have a diagnosis of ADHD, we might be put on medication that can help us focus for a few hours, but it doesn’t stop us from having ADHD, it just makes us a little more able to function in neurotypical environments for a few hours in a world with lots of demands.
The medical model means we have to have reached breaking point, we have to have developed mental health problems before we are even put on diagnostic pathways, so we are usually at rock bottom when we are finally diagnosed.
That is the point under the medical model where we would expect others to accommodate our needs as this is when we start to identify as disabled.
Not everyone who is neurodivergent will disclose their neurology to employers or service providers and there are many reasons for this, some of which come down to the expected attitudinal barriers they will face if they do disclose. Stigmatisation and preconceptions of the things we are perceived to be incapable of can all lead to conditions getting worse for those who do disclose.
The only way to account for our differences is to use lots of strategies and to advocate for ourselves and tell people how we function differently. The hope is they can then make accommodations so we are no longer disadvantaged.
When this is achieved the neurodivergent person gets equal access to education, work, services and society in general. When our differences are accounted for we can flourish.
When our neurodivergent differences are not accounted for and we are instead forced into diagnostic pathways to ‘prove’ we are disabled (so the Equality Act 2010 can apply), this can actually cause us to become disabled.
Under the medical model we are forced to talk about all the things we are bad at as we effectively have to blame our impairment for ‘our’ inability to do something, or for our need for support.
If we took a social model approach, we could acknowledge our condition, impairment or neurodivergence, seek medical advice where relevant and society could focus on where it has unwittingly created barriers, so it can remove them.
We could all adapt how services are delivered so that no one is disabled by the barriers society has created. If we followed the Social Model of disability we would remove the physical and attitudinal barriers that prevent disabled people from accessing education, employment and the community more generally so that more people could live up to their full potential and gain equitable access to a meaningful and rewarding life.
We would ensure that places who claim to be accessible were tested by full time wheelchair-users and others with mobility impairments.
Although it is a minority of neurodivergent people who are wheelchair users we still need to take their requirements into account and consider the intersectionality of wheelchair users.
When a full-time wheelchair user cannot access a building because of a lack of ramp or a door that is too heavy to open, it is not their condition which is the problem but the lack of accessibility which has caused the problem. These issues can often be avoided if disabled people are involved in designing spaces for disabled users.
There is of course a large proportion of people who require medical treatment to reduce painful or harmful symptoms, however implementing the social model here would mean everyone would have equal access to health care.
Neurodiversity and the Social Model
If we looked at Neurodiversity from a purely social model perspective, neurodivergence would not have to lead to disability for most.
If dyslexic children were allowed to use text to speech and dictation software so they could keep up with learning and writing without being disadvantaged by their dyslexia, they might not have massive self-esteem issues or feel disabled by the time they leave school even if they still struggle to read out loud or write by hand.
If Autistic children were able to wear noise cancelling ear buds or listen to music in class, they might not become so overwhelmed by peripheral noises and actually take in more.
If children with attention differences were allowed to move around in class with quiet fidget cubes and such, they might be able to focus more as they won’t have to remind themselves that they need to sit still all the time instead of listening.
Disability is not a dirty word; it is a simple fact of life. If someone is not able to access services and groups, they should not feel ashamed to say they are disabled by this.
Not everyone who is neurodivergent will identify as disabled. Many actually like the way their brain works.
They will probably still struggle with aspects of daily living or work, or both, but on the whole they are managing their lives so they do not identify as disabled.
These are people who are likely to have been able to put strategies in place to help them manage their day-to-day life, and have found employment and housing that suits them. This is however not the norm for many diagnosed neurodivergent people who will tell you they are disabled because society does not account for their different needs.
Imagine if all employers, public services, schools and medical service providers adopted the Social Model of Disability and worked to eliminate barriers for as many disabled people as possible.
If we know that at least 10% of the population are dyslexic but not all schools and places of employment have text to speech software or dictation software to offer 10% of their students, staff or customers we must be disadvantaging many neurodivergent people by not having this as standard.
If the Social Model of Disability was applied to our society, the focus would no longer be on expecting the neurodivergent person to perform to neurotypical standards in order for them to access society.
Some neurodivergent people might still feel disabled when all physical and attitudinal barriers are removed. For example, people with sound sensitivity would still struggle in loud, busy places, but under the Social Model they would be able to explain to staff that the environment was too distressing so that accommodations could be offered.
If people followed the Social Model, they would be more accepting so we would not be judged incorrectly for having noise cancelling earbuds or headphones on or stimming (making repetitive movements or sounds).
Under the medical model we have to have knowledge of specific medical conditions in order to be able to offer accommodations. As we are not medical experts, we defer to medical specialists which in the case of neurodivergence puts strain on the NHS system and forces many to private practice as waiting lists of five or six years are not unheard of.
When an employer or school refuse to make adaptations until a diagnosis is produced, it forces the individual to keep working without accommodations which often results in poor work being produced and mental health difficulties.
Under the medical model many employers will only put accommodations in place once people have proven they have a medical condition which requires accommodations and they only accept this once they have medical evidence and accept the person is covered by the Equality Act, ie they are disabled by their conditions.
This puts a massive strain on an already overwhelmed NHS system. It’s also worth noting that in some areas it is not possible to be put on an adult pathway for some types of neurodivergence like dyspraxia/developmental Coordination Disorder diagnoses. In those places neurodivergent people will most likely end up with many mental health difficulties because they have never been able to have their different needs accounted for. They will most likely identify as disabled.
Using a social model lens we would normalise talking about disability. Not by talking about individual medical conditions and who has them, but about the different kinds of barriers the many different kinds of people accessing our services might have.
Under the social model of disability all workplaces for example, would have at least 10% of their tech having text to speech and dictation software and they would let all their staff try it.
Access to Work, the government department who helps small and medium businesses meet the costs of supplying Disability aids do not require diagnoses. Many schools no longer require a diagnosis in order to make simple adaptations for children. There are also many companies and organisations who have invested in screening tools so they can put adaptations in without requiring their staff to obtain diagnoses.
Some employers still argue that if you don’t insist on seeking a diagnosis then everyone would claim they were Neurodivergent so they could benefit from the accommodations too. My answer is this: if everyone was allowed to work in environments that worked for them, where they were able to advocate for their needs and work to the best of their ability with all their needs being met, this would most likely increase their productivity, so where’s the problem?
Most companies, and services could all benefit from being more neurodivergent friendly by accounting for difference as standard instead of taking the current medical model approach of forcing us to put pressure on the NHS to prove our disability is within us, even for those of us who believe we are mostly disabled by the barriers we experience. If we change lens and use a social model lens we could instead talk about how we can put things in place to remove most of the common barriers many people actually experience.
A TV streaming channel recently announced that they were surprised that 40% of their users had the subtitles on full time. They knew that subtitles would be good for Deaf and hearing impaired people but the percentage of people they expected to use this accessibility feature was much lower, so this shocked them. This shows that when we remove barriers for a few, we increase accessibility for all.
Not only did the subtitles help people who were watching films in a non-native language, Deaf and hearing impaired people but also thousands of neurodivergent people who struggle with auditory processing as well as some who just like to not have the TV on too loud.
I dream of a day where future generations of neurodivergent people will be able to just identify as having difficulties with x, y, or z, and the conversation will move away from us having to talk about medical or neurological issues and instead be accepting of Neurodiversity and ask ‘How can we make this more accessible for you so you can achieve your potential?’
All we need for this to happen is for society to embrace the Social Model of Disability and be prepared to reframe how it views disability.