What Is Ableism and how does it affect those with invisible disabilities?

For the latest piece in raising awareness of the Invisible Disabilities Project, we hear from Helena, Children and Mental Health Service (CAMHS) Young Advisor, and Louise, CAMHS Parent/ Carer Advisor, who have collaborated to discuss ‘Ableism’. You will also hear from Raelene, a parent of an autistic child suffering with anxiety, who will share her experiences from a parent and teacher perspective.

We would like to thank Raelene and her children for contributing towards this article with their experiences and the thoughts they wish for us to take from this reading.

What Is Ableism and how does it affect those with invisible disabilities?
‘Ableism is the overarching act of prejudice and/or discrimination against disabled people and the devaluation of disability (Hehir, 2002) and corresponds with able-bodied/neurotypical privilege, the set of unearned privileges held by nondisabled individuals.’

People with invisible disabilities may not be subjected to as much explicit or overt discrimination compared to those who have visible disabilities; the fact that their disability is not immediately obvious can leave them feeling the need to prove their disability to others who may not understand it. As a result, those with invisible disabilities can face more barriers to accessing support services than those with visible disabilities.

Raelene’s story

We asked Raelene, a mum of children with invisible disabilities and a teacher at a school specialising in supporting children who have invisible disabilities a series of questions, along with her children. Below you can read their responses.

Child sharing

If you feel comfortable to do so, can you share your invisible disability?

Autism, dyslexia, anxiety/social anxiety, and possible dyscalculia.

What is one thing you wish others knew about invisible disabilities (or your condition in particular)?

The stereotypes are not a profile for all with these differences. And it’s not really a disability as it only prevents you from doing things if you let it control you.

Can you share an experience which perhaps highlights why invisible disabilities need to be talked about more?

We are people, not just a disability. It can become frustrating when my teachers at my Special Education Needs (SEN) school baby us and treat us like we can’t handle what we’ve been living with our entire lives.

Parent Sharing

How does your child’s invisible disability affect family life?

You don’t know if the day is going to be the same or not. What you do one day does not work the next. Everyone treads on egg shells as they do not know how they are going to wake up and if it is going to be a good day or a bad day.

What is one thing you wish others knew about invisible disabilities?

That just because they look ‘normal’ doesn’t mean that they are coping.

As a parent of a child with an invisible disability, what is the biggest challenge you have faced?

Getting help and support when it is needed most.

What is one piece of advice you’d give to other parents, who’s child may have been recently diagnosed with an invisible disability or similar condition to your child?

Keep shouting and you will be heard eventually. Never stop fighting. Keep reading up on the subjects.

How does your invisible disability affect everyday life?

Being a perfectionist can come with a lot of pressure. And the knowledge of being an outcast hidden in plain sight can be an isolating realisation.

Teacher Sharing

A day in the life of a teacher working with children with invisible disabilities:

Mainstream does not work for all kids. It is so rigid with data and attendance figures that the mental health awareness for pupils and staff goes by unnoticed. There is not enough support for staff and pupils. If children do not fit the mainstream model, there is nowhere else for them to go. Home-schooling is riddled with pros and cons, but the relaxed environment suits the needs of some pupils. Those with high functioning autism who need time to complete tasks in their own way, have the stigma attached to them that they are geeks and nerds.

As a teacher, it has been said that I am in the minority, as I always think of the individual child, and plan their day accordingly. This means there are seven or eight timetables to sort each day. Knowing the kids is paramount and of utmost importance if you are going to do them justice. This isn’t always taken well by other adults. Knowing how the kids learn means you cater for their needs – something which is missed.

You Look Fine! Study

Many participants in the study ”You look fine!” Ableist Experiences by People With Invisible Disabilities’ share their experiences of how others lack understanding of invisible disabilities by policing actions and bodies, even by others with a disability.

This is demonstrated in the article when Ash, a 41-year-old woman, using public transportation was being told what she could and could not do with her own body: “I rode public transportation all the time and I would need to sit. And sometimes I would sit in the disabled chairs if they were there because I would be in a lot of pain, especially when the train was crowded and people were jostling and stuff and that was really hard for me. And people would give me dirty looks or actually say something like, “What is wrong with you?” you know, “Get out of that chair.”

A lot of the participants grapple with whether it is their role to educate others about their specific disability/ impairment or illness. That said, it takes a lot of energy to try and educate others by yourself and to constantly explain why you may need certain services or accommodations to be provided.

Here is an opinion expressed by Gabriel, another participant of the study;

Gabriel, a 28-year-old man, noted the importance of just having conversations about invisible disability in order to work toward change: I think it’s really significant that people start thinking about invisible disabilities every day because I think one of the problems with invisible disabilities… is that people don’t believe they are real. And it’s because you can’t see or… you take for granted a body able to perform certain things that even when the manifestations of an invisible disability are apparent, because of the take for granted nature of ableism they get glossed.

This is why we feel it’s so important to try and learn and understand more about invisible disabilities and continue sharing stories of people’s experiences as there is such a wide range of challenges.

For further awareness of people living with an invisible disability, please read our previous articles:

CAMHS Equality Champions raise awareness of invisible disabilities

CAMHS Equality Champions: Raising Awareness of Invisible Disabilities

CAMHS Equality Champions: Invisible Disabilities ‘Seeing others with compassion’

Five things not to say when someone has an invisible disability