By Julia Allen for Possibilities Psychological Services
Published 4.47pm AEST, 24/07/2024
Internalised ableism is a tricky concept for a person with a disability. Navigating a world shaped for and by nondisabled people can have significant emotional and physical tolls, and there is a present social expectation that people with disabilities should always be working to overcome what makes them disabled. Ableism is deeply ingrained in much of modern society, and the individual experiences of a person with a disability and the oppression they have experienced through their lives often lead us to have a negative perspective on how we think and feel about ourselves as people with disabilities. This is true if you are a person born with a disability or have an acquired disability (Jóhannsdóttir et al., 2022).
A [non-exhaustive] quick reference guide is below for some things that may suggest you are struggling with internalised ableism:
- Feeling like you’re ‘not disabled enough’ or ‘not sick enough’ to need support from a program or service
- Having shame around symptoms that impact how you are perceived by others
- Shame around appearing visibly disabled or becoming visibly disabled.
- Not identifying with being a person with a disability based on your own internalised bias around what this could mean for you.
- Hiding diagnosis from those you care about
Avoid using tools/aids that will benefit you based on the perceptions of others. [e.g. mobility aids, parking sticker]
- Pushing through your limitations based on an expectation of what you ‘should be able to do’
- Comparing yourself to non-disabled peers
- Shame or guilt for needing rest/support with tasks
The most common rhetoric I hear as a person with a disability is an ongoing narrative of people who know what to do to help themselves, but are held back against taking action by the expectation that they should not have to require any help in the first place. There is an expectation to meet the same levels of productivity and functionality as their nondisabled peers, while not requiring any [or limited] support to do so. Chiu Lau, psychologist and founder of Possibilities Psychological Services, advocates for a compassionate approach when navigating internalized ableism. She encourages the adoption of sustainable and affirming practices over short-term self-sacrifice, which may reduce burnout and increase longer-term productivity and well-being.
Below is a no-frills, spoonie survival guide for fighting internalised ableism, based on personal lived experience as a person with a disability, and some evidence-based practices to round out your self-reflection. First off, what are ‘spoons?’.
For those not familiar with Spoon Theory, it is a metaphor created by Christine Miserandino to help explain the energy disparity and limited resources that people with chronic illness or disability have to manage their daily lives.
[Note: Here, a ‘spoon’ is a unit of measurement for energy]
The basic concept is that for each person, any noted activity in their day requires a certain amount of ‘spoons’. The number of spoons each task costs is related to the physical and mental energy this task would take for that individual. In the case of a person with a disability or chronic illness, they may find that the number of spoons they have available to them on any day is severely limited. Once they have spent all of their spoons on tasks, they may no longer have the energy to continue with needed tasks, no matter how vital. Attempting to do so with a deficit of spoons is often a one-way trip to burnout town.
Spoon theory is in essence a strategy to self-pace our tasks and lets us consider the need to work to a certain quota to avoid burnout. Try to avoid ‘borrowing’ from tomorrow’s spoons. This may seem like a great idea when you’ve used up your spoon quota, but sometimes it may mean you have a severely limited number of spoons the next day, likely used to recover, or even trigger a flare or crash. Have you heard the phrase ‘you can’t pour from an empty cup?” Probably, right?
When you have a disability or chronic illness, it can be more like trying to boil an empty kettle. Let alone not getting anything from it, you’re more likely to burn yourself out and cause some serious damage. When it comes to recovering spoons, don’t despair, it is possible. While we cannot magically recover more spoons, we can use other strategies and our ‘spoonie self-care’ to replenish and conserve our energy.
Spoonie Self-Care Tips:
- Prioritise your needs – Your routine should focus on the basic things you need on any given day, not what you feel you should be able to achieve.
- If you’re low on spoons – what you find relaxing/comforting can help you reset and replenish your spoon capacity.
- Be kind to yourself! Sometimes, as a spoonie, even self-care costs too many spoons. Try to listen to what your body needs without judgment, and don’t be afraid to be imperfect.
- Incorporate aids and supports into your daily life [if relevant], without self-judgement.
And yes, I know the last one can be intimidating. But the facts are that it’s all right to need help, and not weak to need support. I am a young disabled person who uses a mobility aid upon occasion as needed. Needing a mobility aid is not a reflection of your qualities as a person, and neither is requiring any other form of support. Reframe it like this: knowing you need support, asking for and using it is a strength, not a limitation.
Strategies to Combat the Spoonie Gremlin:
- Be kind to yourself, again! All people with disabilities and chronic illnesses struggle with internalised ableism and self-stigma. It’s okay to forgive yourself for any harm this has caused you in the past, so you can move on.
- Self-Compassion: Reframing how we think about ourselves and treat ourselves has power. Self-compassion is giving yourself the same compassion you’d show someone you love when you’re feeling bad about yourself or how your disability affects you. It means being supportive towards yourself when things are hard. Instead of allowing yourself to feel shame or guilt, try and think about how you would feel if this was happening to someone you love. Stop and tell yourself “This is hard right now, what can I do to comfort and care for myself?” (Neff, 2003).
- Set realistic goals: Being aware of your limitations is not a deficit. Being aware of what you can achieve day to day based on your needs that day is empowering, not restricting. It allows us to ration out our spoons to ensure we are practicing what our bodies or minds need in that situation. Being realistic does not restrict what we are capable of, it allows us to thrive in an achievable way.
- Radical self-acceptance: When we as people with disabilities can accept our reality in a non-judgemental way, we can break the shame, internalised pain and negative emotions we experience relating to our identities. Try reframing challenging experiences you have in a positive or neutral light, acknowledging the situation that you are in without judgment. We have the power to construct positive identities as people with disabilities. The reality of being a person with a disability is not necessarily a negative one (Sugarman, 2023).
- Build a support network: Much research into resisting internalised ableism focuses on the importance of safer spaces, and a knowledgeable, compassionate community (Chaturvedi, 2020). Having supportive loved ones is a major facet of spoonie self-care, but it can also be of value to connect with other people with disabilities or chronic illnesses. Having a community of others with similar experiences can help us recognise our value and be recognized by others. Being accepted and valued for your experience and perspective, not despite it, can help us along our journey to accepting ourselves.
References
Chaturvedi, S. (2020). Ableism- A Critical Analysis. Social Action, 70.
Jóhannsdóttir, Á., Egilson, S. Þ., & Haraldsdóttir, F. (2022). Implications of internalised ableism for the health and wellbeing of disabled young people. Sociology of Health & Illness, 44(2), 360–376. https://doi.org/10.1111/1467-9566.13425
Neff, K. (2003). Self-compassion: An alternative conceptualization of a healthy attitude toward oneself. Self and Identity, 2(2), 85–101. https://doi.org/10.1080/15298860309032
Sugarman, M. (2023, September 14). Positive Reframing Disability Model. Disabled World. https://www.disabled-world.com/disability/positive-reframing.php#main
Chiu Lau is a Psychologist at Possibilities Psychological Services, an Australia-wide online therapy provider. Since 2003, she has developed expertise in the management of mental health, chronic fatigue, autism & related neurodevelopmental differences, learning & intellectual disabilities, rare genetic conditions, carer & sibling mental health support, and gender questioning & gender diverse presentations.
Recognising the challenges associated with navigating various intervention and mental health provider options, Chiu invites you to book a complimentary 20-minute chat to explore your options and possibilities here.