Author’s Note: I cite various British sources in this article that use the term ‘Learning Disability’ to refer to an ‘Intellectual Disability’. This is standard practice in Britain. In all such instances, the British use of the term shouldn’t be confused with the American definition of a Learning Disability — an umbrella term used to refer to a variety of learning deficits (e.g. Dyslexia, Dyscalculia, and Dysgraphia)
Earlier today I attended a church service with my sister, Maria, for the first time since this pandemic began. Maria has an Intellectual Disability and, as her Caregiver, I help her to attend social events such as the Church service this morning because without someone else’s assistance she wouldn’t be able to — both for practical reasons (e.g. not being able to navigate her way to the church) but also for social reasons.
I get anxious at the idea of leaving my sister unaccompanied even for a few minutes in the majority of social situations — Church, a coffee shop, heck even a waiting room in the doctor’s surgery — because a lot of people don’t know what an Intellectual Disability actually is. Meaning, they don’t understand my sister’s, at times, unusual behavior.
Her blank stares, her tendency to talk to herself or people she doesn’t know, her repetitive pacing, her unusual emotional reactions (e.g. bursting into hysterical laughter…as she waits for a bus)
People are often offended by the behavioral implications of Maria’s Intellectual Disability and aren’t afraid of making their disdain apparent — a heavy frown and a shake of the head is a fairly common reaction.
Take church this morning; as I sat next to my sister — face-masks on, socially-distant from the rest of the congregation — I noticed that she kept turning around and staring at the empty seat next to her. Occasionally she moved her hand onto this seat and ‘stroked’ it.
In the middle of a silent church, Maria’s behavior stood out — I noticed a few confused glances but tried to ignore them and quietly ushered Maria’s attention towards the pulpit at the front of the church.
Despite my efforts, she kept on drifting back to that chair.
When we were ready to leave I, regrettably, caught a glimpse of the woman who had been sat behind us — she was staring at my sister, shaking her head with disapproval, and audibly tutting.
I quickly reminded my sister of the coffee shop we were going to for lunch as we left the pew, hopeful that my distraction technique would spare her the pain of seeing another human being look at her in such an unkind way.
This morning’s events aren’t unique. On a depressingly frequent basis, my sister is looked upon with contempt by people who don’t know her, or the disability she has.
I can’t say I blame them, how I can expect members of the general public to be more understanding of something that they’re completely ignorant of.
I have no doubt that if it wasn’t for my own background, growing up and helping to care for someone with an Intellectual Disability, that I too would have probably thought that my sister’s behavior was unusual this morning. Maybe I would’ve shaken my head and tutted as well, I hope not, but ignorance can make you do terrible things.
Being the Caregiver of someone with an Intellectual Disability has taught me some valuable lessons but, sadly, it’s also opened my eyes to the discrimination which people with this disability are routinely subject to.
Misconceptions, negative attitudes and discrimination affect the daily lives of people with learning disabilities […] They can also lead to low self-esteem, a sense of helplessness and general fear in going about one’s daily life. A recent report notes that many people with learning disabilities fear being victimised and, as a consequence, avoid certain places and adjust when and where they travel.
What can we do to stop discrimination towards people with Intellectual Disabilities?
The report by Mencap (linked above) makes a worthwhile suggestion:
In view of apparent widespread confusion about what a learning disability is, and misconceptions about the capabilities of people with learning disabilities, attempts to educate the general public should be part of efforts to counter prejudice and discrimination.
Given that a reported 73% of lay people in the UK are not able to give an accurate example of an Intellectual Disability and only 28% are able to recognize signs that someone might have an Intellectual Disability, Mencap is right to see educating the general public as being of paramount importance in tackling discrimination.
If the woman at my church this morning had been aware of what an Intellectual Disability was and the behaviors that it might cause, maybe she would’ve been more tolerant of my sister’s actions. Perhaps she would even have replaced her frown with an empathetic smile in my sister’s direction.
What you can do to help
“The first question facing any attempt to tackle negative attitudes and discrimination directed at people with learning disabilities is who to target. Possible targets include the general public, the media, those influencing legislation, policy and law enforcement, employers, and groups most likely to have contact with children and adults with learning disabilities, such as children and young people in inclusive schools, teachers, health and social care providers, carers, co-workers, and neighbours of supported living schemes, or indeed parents and siblings of people with learning disabilities.”(Mencap, ‘Changing Attitudes To Learning Disabilities’)
To tackle discrimination against people with Intellectual Disabilities, awareness needs to increase across the board — the report by Mencap, quoted above, is right. But this wide-ranging aim doesn’t help you in your own efforts to become more aware of what an Intellectual Disability is.
So what can you do?
Firstly, try to educate yourself about what an Intellectual Disability actually is. Hopefully, the details of my sister’s experiences in this article have helped with this. However, Intellectual Disabilities can manifest in a wide variety of ways, my sister’s experiences will be different from someone else who has the same disability. As such, it’s useful to have a general overview of this disability and the wide variety of ways it can affect the people who have it.
The following is a general definition of an Intellectual Disability from the American Psychiatric Organization:
Intellectual disability involves problems with general mental abilities that affect functioning in two areas: Intellectual functioning (such as learning, problem solving, judgement) Adaptive functioning (activities of daily life such as communication and independent living)
A general definition such as this one, whilst accurate, is only useful to a certain degree. It won’t help you in getting to know the different ways that problems with “intellectual functioning” and “adaptive functioning” can manifest in different people with an Intellectual Disability.
To attain this kind of information, you will need to delve further — thankfully, the websites of various health organizations and Intellectual Disability charities provide this kind of detailed information.
Below are several links to websites that provide a wealth of information about Intellectual Disabilities in a fairly accessible and easy-to-read manner:
- American Association of Intellectual and Developmental Disabilities
- American Psychiatric Organization.
- The UK Mental Health Foundation: Foundation For People With Learning Disabilities.
- UK based Intellectual Disability charity Mencap.
A second way that you can help, and perhaps of more importance, is to make the effort to put your mind into a non-judgemental space when you go about your daily life.
Expressing a non-judgemental attitude towards anyone and everyone that you come across automatically stops discriminatory attitudes in their tracks — discrimination against anyone, not just the Intellectually Disabled.
In your daily life, if you see someone acting ‘oddly’ or in a socially unacceptable way, try not to jump to conclusions. Always be aware that there might be a good reason for a person’s offensive behavior, a reason that’s beyond their control. It might not be an Intellectual Disability, it could be a mental health issue or a history of substance abuse, but in all such cases expressing a non-judgemental attitude will always be of benefit.
Being judged for the things you can’t control is never nice — I’ve suffered from Depression and an Eating Disorder, I experienced judgment for various behaviors I exhibited due to both of these conditions and it made it hard for me to feel accepted by society in spite of my health conditions. Let’s make sure we don’t ostracise people who have an Intellectual Disability in the same way.
We need to start a movement
An Intellectual Disability often makes it difficult for the individual affected to communicate with other people, given these difficulties it would be hard for a lot of people who are Intellectually Disabled to start any kind of movement to end discrimination towards themselves — my sister certainly couldn’t, which is why it is me writing this article and not her.
We can be the voice of the people with Intellectual Disabilities who struggle to have their own voices heard. The voice of people like my sister. We can start a movement towards ending discrimination against people with an Intellectual Disability.
It doesn’t have to be anything grand that you do to be part of this movement. As I said earlier, there are two things you can do right now to help this cause:
(1) Educate yourself about Intellectual Disabilities.
(2) Adopt a non-judgemental attitude towards the people that you come across in your daily lives.
By doing these two things you will be playing your part in creating a society in which people with (and without) an Intellectual Disability feel welcomed and not shunned. I’m sure that’s the kind of society that we would all appreciate being part of, Intellectually Disabled or not.
Thank you for reading,