Yesterday morning, just before work, I was checking my Twitter timeline when a tweet caught my eye. It was from disability blogger and occupational therapist Georgia Vine asking for information about any model that’s useful for explaining the stages of accepting disability or impairment.
Her query immediately got me thinking. I went from lazy scrolling to trying flat out to unpick and describe the different ways that I’ve experienced and related to my body, mind and disability. I’d never really given this much thought before, which in itself surprised me.
Georgia’s tweet resonated with me particularly because it mentioned both disability and impairment. These two terms are often used interchangeably but within the Social Model of Disability the difference between them is crucial.
Impairment is your medical condition or the facts about your body. Disability is the lived experience of barriers which you experience because of your impairment. I recently did this drawing to help explain the difference.
A few people mentioned the Grief Model in response to Georgia’s question. I don’t know loads about this, but my understanding, supplemented by a quick search, is that this way of thinking proposes five stages of grief: 1) Denial 2) Anger 3) Bargaining 4) Depression 5) Acceptance. This doesn’t specifically relate to disability, but I can appreciate that some people might experience feelings of grief for a lost version of themselves.
But the Grief Model doesn’t really reflect my experiences, so I had a go at describing the stages I went through myself in relation to accepting my impairments and to identifying as a disabled person. For me, these processes are distinct from each other and run in parallel. I couldn’t stop thinking about this all day so decided to visualise these two journeys to help me reflect on them in more detail. Here’s what I came up with:
Stages of Accepting Impairment:
Impairment is your medical condition or the facts about your body
1. Feelings of shock or grief – May include minimising change, grieving for lost body, mind or opportunities. May include feelings of fear, intense loss or distress. This could include focussing on treatment, cure, or returning to doing things in a normative way.
2. Disclosing impairment to friends or family – Talking to those around you, naming or acknowledging your impairment to others.
3. Complying with established narratives – Ideas of overcoming disability or not being defined by impairment are deeply embedded within our culture. This stage may include a reluctance to use aids or accept support. There may be an urge to distance yourself from others with similar impairments.
4. Adjusting to changing circumstances – This may include accepting aids and support or finding new ways of doing things that are important to you.
5. Developing an understanding of impairment – Learning about your impairment from both personal experience as well as from wider medical or societal perspectives.
6. Connecting to wider narratives or communities– Feeling part of a community with shared experiences, developing language to describe your experiences to others.
7. Acceptance of body, mind and impairment
Identifying as Disabled:
Disability is the lived experience of barriers due to your impairment
1. Experiencing barriers due to impairment – These barriers may be environmental, systemic, financial or attitudinal.
2. Feelings of frustration or rage at barriers – Anger at the existence of barriers and at the failure to provide equal access.
3. Recognising internalised ableism – Recognising the impact of restrictive and negative views of disabled and neuro-diverse people within mainstream culture.
4. Connecting with disabled-centred ways of thinking – This could be learning about the Social Model or other disabled/neuro-diverse-centred models.
5. Applying ways of thinking to your own life – applying these models to your own life and circumstances.
6. Giving and receiving solidarity – Connecting with, supporting and being supported by other disabled or neuro-diverse people. This moves beyond just those with the same impairment as you and recognises that people with very different impairments may have shared lived experiences of being excluded or marginalised.
7. Valuing & contributing to disability culture
These stages lead to a personal and political understanding of yourself, your access requirements and your experiences within society. I have no idea how the stages I’ve identified fit within broader thinking on disability or if they’ll be recognisable to other disabled people. Let me know what you think in the comments below.
Interestingly, I realised that I go through the process of adjustment each time my conditions change. For example, when my tics intensified, when my mobility deteriorated, or when I started experiencing chronic pain. But so far, I’ve only once gone through the process of identifying as Disabled – my identity as a disabled person has been pretty static despite the fluctuation of my impairments.
In my initial response to Georgia I said I thought the experiences of these stages would be different for people born with their impairments and those who acquire them. Actually, having thought it in more detail, I suspect there may be less difference than I first thought ¬– even if you’ve always had a particular impairment, you’re still likely to be impacted by societal expectations and negative ideas about impairment more generally. It might, though, be different if you’ve been raised by a disabled parent or share an impairment with others in your family.
These stages are very much based on my personal experience and I’d be really interested to know how other disabled people have experienced these processes. I imagine that this will differ depending on your impairment and how connected you are to other disabled people. That said, I thought this through from my perspective of someone with: neurological, mobility, sensory processing, chronic health and learning impairments.
Thanks very much, Georgia, for getting me thinking about this. I can’t wait to read what you’ll be writing on this subject next. It underlines for me how important it is to have disabled people working in professions that relate to disability, like occupational therapy. I’m not sure a non-disabled person would’ve asked Georgia’s question in quite the same way.