Although I’ve been disabled all my life, I’m still learning about disability every day and the older I get the more questions I have. In my previous post, I spoke about how ableism affects me and how it challenges me to question whether I’ve accepted my disability. So, I took to Twitter to find out a little more about accepting disability and asked this question…
Is there a model that is useful to explain the stages of accepting a disability or impairment?
Yes, be prepared for a long read!
Before we get into the blog – thank you to everyone who responded. I am still getting through all the literature that was sent my way. Maybe this could be a good dissertation, who knows?
“I’ve no models for this but interested in it- I imagine there will be differences betweenthose born with impairments & those who acquire them. A model that separated out accepting impairment & identifying as Disabled wouldbe good.”Jess Thom, @touretteshero
Jess has also written about her take on the discussion here.
I must admit when I wrote this tweet this was at the forefront of my mind. Can someone who has acquired a disability later in life and someone who has been born with a disability use the same model?
Let’s take that stages of The Grief Cycle:
- Denial and isolation
This cycle is a great example and I can say that I do relate to some of the stages for example denial and isolation (Axlerod, 2020) when I was a teenager I didn’t want to accept that I couldn’t go ice skating on Friday nights just like my friends.
On the other hand, I’ve never known what it’s like to be able to go ice skating so although I was frustrated, is it grief if I’ve never known anything different?
“Depends on how you’re raised. So many are brought up with a dream concept of what could have been. I’d say we share more similarities. I was born disabled & also gained a much greater impairment aged 15. I went through both. I still grieved.”Mik Scarlet, @MikScarlet
I agree with this concept. I believe that I have accepted my disability and have such a good understanding of it because of my parent’s support and the fact that they never enforced what could have been. Of course, it came up in conversations, but it was never followed by “if only” or “it’s a shame” It’s a cliché but I wouldn’t be where I am today without them.
Putting my occupational therapy hat on, can one model of grief be applied to everyone with a disability? That wouldn’t be client-centred which of course is a core concept of the profession.
“I find metaphors more helpful than models: more nuanced and individual. An enduring metaphor for me comes from football: I’m the unlikely coach for an unco-ordinated team (my various impairments) with unpredictable training session (investigations).”Dr. Wendy Bryant, @DrWMB
This is an interesting view that struck a chord with me because from the discussions I realised that what I asked didn’t have a yes or no answer. Every person has their own individual story and I found that some people who have multiple disabilities still found differences in accepting their disabilities. I learnt that accepting a disability is a lot more than just accepting the impairment it’s about accepting the barriers in society and so much more.
The fact that both healthcare professionals and people from the disabled community got involved in this discussion was so exciting as I got to see this from different perspectives. So many models from the occupational therapy world were named and these, in turn, made me look at this through a very different lens.
“The concept of the therapeutic ‘emplotment’ as described by Cheryl Mattingly seems to make sense where new narratives of the self are plotted (not necessarily by a healer though).. and I think we can work well with the Kawa model.”Ruth Dymphna, @RDymphna
The Kawa model is a model that is used in occupational therapy which recognises the diversity of each person’s occupational narratives (Duncan, 2011). The model is unique to an individual and places a role in helping one’s identity to the world (Duncan, 2011).
I think this is a great example of a model that demonstrates client centeredness to help someone come to terms with disability. I’m only aware of this model because of my studies. What about those that are not aware of this model to explore journeys and barriers? Do we need to make these models more available for those that are searching for answers to make their journey easier?
“Gotta throw this out there: Is it already in our #OccupationalTherapy models as part of spirituality and we just haven’t fully explored of addressed it?@TheCMOP”Dr. Tara Packman, @TaraLPackman
The Canadian Model of Occupational Performance and Engagement can help one look at impairment across the lifespan with spirituality being at the core of the model (Duncan, 2011). Therefore, does this need to be investigated more and recognised for people to use?
“I wonder is there’s a parallel process? The social model of disability makes accommodating a disability a shared responsibility. As individuals, our processes will be different. It’s helpful to understand my vasculitis as retraumatising, so acceptance as always work in process.”Dr. Wendy Bryant, @DrWMB
The social model of disability suggests disability results in barriers, not impairments (Levitt, 2017). But is this enough? From this discussion I’ve discovered that accepting a disability is about a lot more than accepting you and the barriers, it’s also about being able to look at these barriers with a raised eyebrow and therefore look at them more curiously.
I don’t think there is and will ever be a straight forward answer to this question, but does there need to be? If there is a model out there that people feel can help enhance their journey, then I guess that’s all that matters. However, I feel like the biggest conclusion from this discussion is the lack of awareness of these tools.
Once again thank you so much to everyone who has responded to this question, I am blown away by the response I, ‘little old me’, got, this post could have easily been 10 times longer.
I’m only 20-years-old I have so much more life experience to gain, and so much more to learn. I must admit I don’t know if I’ve interpreted this discussion correctly. Right now, I am very nervous for this post to go live. So, I hope I’ve done this justice if you were involved in the discussion, I know I’ve picked up on things I understand and related to more so I need to admit some bias as a few more models from different professions were named. We all learn from one another and I’m so thankful that I have this amazing online community to learn from every day.
I hope this is just the start of a bigger discussion, I would love to know what you think.
Thank you for reading and please get in touch.
Retrieved from Axelrod, J. (2016). The 5 stages of grief & loss. [Online.] Retrieved from https://psychcentral.com/lib/the-5-stages-of-loss-and-grief/
Duncan, E. (2011). Foundation for practice in occupational therapy. (5th ed.). [Online.] Retrieved from https://www.dawsonera.com/readonline/9780702046612
Levitt, J. M. (2017). Exploring how the social model of disability can be re-invigorated: in response to Mike Oliver. Disability & Society, 32 (4), 589-594. [Online.] Retrieved from https://doi.org/10.1080/09687599.2017.1300390
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