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By Amber Daw
You can listen to this blog post here: https://podcasters.spotify.com/pod/show/the-luna-project/episodes/Sea-Glass-Survivors-Navigating-Education-as-Disabled-Young-People-by-Amber-Daw-e2hs72r
As part of reading for my MA Inclusive Education Autism module, I came across the paper “‘Sea-glass survivors’: autistic testimonies about education experiences” by Jacqui Shepherd, Beth Sutton, Simon Smith and Marysia Szlenkier. This paper enables three autistic adults (as co-authors) to reflect on and share their educational experiences through written testimonies.
Each testimony was incredibly insightful, illuminating different and shared challenges encountered throughout various stages of education. Simon reflects on growing up at a time when society did not understand autism to the extent it has come to in recent years, the benefits of understanding his autism and how special interests and monotropic thinking can be ways in when supporting autistic young people. Marysia shares a slam poem reflecting on her university experiences, halfway through which she was diagnosed autistic, and the challenges that come from navigating an inherently ableist system.
Beth, whose testimony appears first in the paper, provides the inspiration for this piece. Throughout her piece, Beth utilises sea-glass as an extended metaphor for the ways in which her education experiences have shaped her. She writes:
“Sea glass is weathered by what it has endured at sea, a process that can be related to education. I am fundamentally marked by the system. Confidence eroded. Anxiety wavering. Now overcompensation is a form of self preservation, taking breaks is still unnatural and achievements come with a little sense of pride. Just as sea glass is ground down by every knock, its eventual form is a sum of its aquatic endurance” (pp.5-6)
I felt the parallels drawn between the sea glass as being cumulatively eroded and shaped by its time at sea and an autistic person being forced to endure and be shaped by the education system viscerally.
And I couldn’t help but think of the experiences and anecdotes shared by Team LUNA and the young people we have worked with that echo these sentiments.
Our experiences extend this analogy beyond neurodivergent experiences of education to encompass navigating education with a range of different disabilities and chronic illnesses. Yet, exposure to the choppy seas of inaccessibility, ableism and the impact this has remain similar.
Challenges of Being Disabled in Education
We asked the LUNA community to share some of the challenges they have faced as a result of being disabled in education, and it was unsurprising to see that they identified a huge variety. The education system is rife with ableism, and the experiences of the LUNA community only confirm this further.
Some of the most common challenges shared were:
The reliance on presenteeism: The mainstream education system is built upon being able to be in school all day, every day of the week. Something that is often unattainable for disabled young people or will come at a detriment to their ability to use their energy for activities outside of school.
Inaccessibility of the school environment: This has several branches. On a structural level, it's things like a lack of lifts and automatic doors. Environmentally, it's the harsh fluorescent lights, the bustling corridors, the noisy lunch halls alongside the lack of quiet spaces to rest away from the crowds.
Processes for accessing support are overly complicated: Often, accessing support requires continual disclosure of highly personal, sensitive, and sometimes traumatic medical information to multiple different people. Different services/departments seem to struggle to communicate with one another, which only adds to the additional admin you have to do as a disabled person.
Not wanting to be seen as different: Generally, young people want to fit in with the wider peer group. This is no different for disabled young people; we often hear from young people who have hidden their disabilities at school for a really long time, usually until something happens, which means they can’t hide it anymore. This can create hesitancy in making full use of the support they do have in place, whether that's not getting a TA to help them move around the school, not using stim toys, not using a time-out card, or not mentioning when staff forget to implement reasonable adjustments. It helps the young person to fit in, but at what cost? A detriment to both their physical health and mental health.
Lack of understanding from staff: From our community, we often hear about situations where staff have made assumptions or judgements about the disabled young people in their classrooms and the negative impact this can have on them. Whether that's making assumptions based on the invisibility of symptoms, seeing reasonable adjustments as a choice, not a necessity, making generalisations about disability or outright refusing to accommodate access needs. This can be hugely detrimental to a disabled young person’s sense of belonging at school. However, we understand that some of these misconceptions occur as a result of the fact that teacher training does not adequately prepare teachers to support disabled young people in their classrooms, and this needs to change at the highest level.
Cumulative Exposure
Looking at the number of different challenges presented by the education system to disabled young people, it is not difficult to see how exhausting the constant barriers can become. Like the sea glass, worn down little by little by each wave and clash with the rocks, disabled young people begin to feel ground down by the system. The constant self-advocacy and exposure to barriers can significantly taint education experiences. How can we expect disabled young people to throw all their energy and attention into learning, socialising with friends and having fun when not only are they dealing with the day-to-day symptoms of their disabilities but also having to continually navigate inaccessibility? This can understandably perpetuate school anxiety, so it is pivotal that the school, medical professionals and the young person's family work together, alongside the young person themselves, to minimise barriers and ensure that the support provided is young person-led and sets them up to succeed.
How can we do that?
Well, there is no straightforward answer to this one. Every young person is unique, so the approach to their support will also need to be individual. Not only that, but lots of the ideal solutions would require systemic change beyond the grasp of the majority of practitioners, but it's important not to discount the huge impact that seemingly small things can have.
This could look like:
Regular check-ins with the young person, building rapport and providing a regular point of contact for any issues that arise
Letting the young person know of any changes to the regular school day in advance
Allowing the young person to put equipment in the room ahead of a lesson rather than carrying it around all day
Reminding teaching staff of reasonable adjustments regularly and supporting them in implementing them
Working collaboratively with different teams involved in the young person's life
Having stim toys available to use
Creating a system for helping the young person catch up with missed content
Thinking about the ways you can use technology to increase accessibility
Helping the young person to prioritise tasks if they are unable to manage all of them
Getting to know the young person as a whole person rather than a list of diagnoses on a piece of paper
And so much more!
Disabled young people deserve to thrive in education, not just survive.
Disabled young people navigating education, the sea glass survivors, who did not choose to get caught up in the waves.
You can read the full paper here: https://sussex.figshare.com/articles/journal_contribution/_Sea-glass_survivors_autistic_testimonies_about_education_experiences/25160234
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