I knock on Inaya’s door on a rainy Thursday evening. Outside the sky is thick with purples and greys but her room is welcoming with soft yellow light and an invitation of tea. Plants sprawl across the windowsill in an orderly manner and the sun just peaks out as I enter. We hug. She offers me a plushie to hold, a friend, and we happily chat away about our days.

We start talking about our disabilities and an article I wrote about the term ‘disabled’. She remarks about the difficulty of getting used to the ‘disabled’ label, but notes that seeing people go through the same thing helps. While Inaya and I have very different disabilities (I have a mobility disability and Inaya was recently diagnosed with ADHD) we are able to relate to each other, sharing our feelings about the label. For me, ‘disabled’ seems so totalising, like a binary between being abled and not. Yet that is not how I am; I am abled in some ways, and not in others. For Inaya, she finds the label ‘useful’ as it helps to her to understand aspects of herself:

‘My relationship has changed with it a lot’, Inaya says regarding her dyslexia diagnosis and her awareness of her neurodivergency since she was a child. She notes, ‘I didn’t think it was that severe, I never really considered myself disabled’. Inaya picks up on a common feeling that a lot of people with disabilities have: the feeling of invalidation, of being not disabled enough to feel they can use the label, or feeling that it does not accurately depict their relationship with themselves. One label cannot sum up everyone’s experiences and in this way it can be invalidating to have a label thrust upon you. She goes on to talk about how it felt to tick the disability box on applications, feeling it too ‘extreme’ and not aligning with her own experiences.

We continue to talk about the lack of awareness surrounding ADHD; how it is typically seen as hyperactivity, a trait that Inaya does not typically display. Generally, hyperactivity is associated with younger boys, while other signs of ADHD are explained through gendered stereotypes: ‘she’s not spacey, she’s just whimsical!’ Inaya jokes. No one picked up on Inaya’s ADHD. At university, Inaya struggled with her workload, finding it impossible and blaming herself as other students seemed to be managing. ‘I thought my lack of concentration was my fault… I just thought I was struggling because I was me’. She thought (and was told) that she just couldn’t cope with the Oxford workload.

Then she began to research neurodiversity and found that she related to traits of ADHD alongside her dyslexia. Several appointments later, she was diagnosed with ADHD. She states that it was the diagnosis that altered her relationship with the ‘disabled label’: ‘I feel disabled…last year I was not able to do the work and that is because I have a neurodevelopmental disorder. I am physically incapable of doing it’. She explains that the diagnosis came as a comfort to herself, but complicated her relationship with others. It felt odd, she told me, having someone external to yourself placing a label on you, telling you what you are, but felt nice to know that it was a disorder, and there wasn’t anything ‘wrong with her’.

However, this line of thinking resulted in Inaya believing that she could never do work, she literally couldn’t, and so it wasn’t for her. ‘Work is horrible’ she tells me, unsure of whether she was struggling with the workload or whether it was the impact of her ADHD. But going home for the winter vacation made Inaya realise that she did in fact love her subject and learning, but no longer wanted to pursue a career in academia. She realised that the degree is hard and that’s ok, but she wishes there was more advice for neurodiverse students on how to study. ‘I’m being told I can’t focus, can’t manage time and they are so important to be able to survive here’. She tells me that she doesn’t know what the right answer is, and doesn’t know how to navigate her second year. ‘I’m confused’: she looks at me with a strained expression, and I understand. University is a massive upheaval and while DAS can support accessibility needs, long waits and little support from other avenues make managing that much harder.

A diagnosis made Inaya feel that she understood herself better but she also saw how her ADHD impacts those around her, her hyperactivity being ‘too much’ for some. ‘It was heart shattering…I was being myself’. While she understood the situation, she became hyper aware of her actions, masking her behaviours. She says that the diagnosis helped as she was able to understand that it was her brain, and she wasn’t intentionally trying to upset anyone: ‘I can’t help it…it’s how it is’.

 While Inaya understood that her actions were as a result of her neurodiversity, she struggled to separate it from herself. ‘It impacts everything’, she tells me, explaining the difficult relationship she has with her identity and her ADHD. ‘Am I all just ADHD?’, ‘How much of me is me?’. She talks about how she has been consuming a lot of media surrounding neurodiversity, and while it validates her experiences, she has become lost within it, unsure of who she is outside of her disorder. Sometimes, in an effort to understand ourselves, we can get all tangled up. ‘What’s left?’ she asks me, struggling with what to do now; she has learnt so much but feels stuck.

Inaya feels that the next step would be medication. I notice that she uses the term ‘fix’ a lot and I ask her thoughts: ‘I know it’s not a fix, but I still use that word. I guess, I just want my brain to be a little more…’. She tails off. Something I have always struggled with in terms of my disability is language. I never felt connected to the ‘disabled’ label and don’t feel ‘fixed’ after my surgery. Instead, I feel like I occupy a liminal space that can’t be expressed by words. I understand how Inaya feels. 

Years-long NHS waiting lists and expensive private treatment have stopped Inaya from getting the prescriptions she desires to help manage her ADHD. Every place she researches cannot treat her within a year. ‘I need it now’ she tells me, not in 4 years after her degree has ended. ‘I guess I have to just wait for something that’s going to change my life forever’. She gets frustrated, telling me why this treatment is not prioritised if so many people require it. She sighs and looks away from me. 

As the conversation winds down, she tells me how she wished people knew: ‘I just want you to be aware, not pity me. I just can’t do some things and I want you to know I can’t’. We discuss the lack of awareness there is about disabilities, both in general educating and how to manage having a disability: ‘we never talk about what it means to be disabled’. Inaya accepts that there are limitations in her life and it’s hard, but she is exceptional, ‘I got here!’. We end by talking about how hard it is to be disabled at this university, but also at how far we have both come. I am proud of us both.

I ask if she has any final thoughts: ‘‘If you are not disabled do your research and educate yourself and others’.