Lived Experience Forum

[Appleblossom]

I enjoyed your discussion about external factors being part of life, and that disability implies the defect is with the person. @chibam   It is a huge discussion.

@periwinklepixie I probably fall into the camp of internalised ableism ... will look into it.

edited

[still_bookish]

How I define disability for myself?

I guess I’d say: my mental illness impairs my functional capacity. If I were being more direct, it’d be more like: my brain messes with my ability to live. (I also have some physical health issues that impair my ability to do things at times.)

I've found that accepting that I do have a disability has helped me to be kinder to myself—I don’t beat myself up (quite as much) for not achieving as much as others. My disability doesn’t define me, but it is a big part of me. It impacts every aspect of my life. Acknowledging it makes it easier to give myself credit for the things I do achieve (even when that is only surviving).

How have others defined disability for me?

I’ve been through the process of applying and fighting for the DSP and NDIS. While the government systems that provide (or, more often, do not provide) these supports refer to functional capacity, they are very rigid and focussed on ticking boxes. I have never fit into the ‘right’ boxes, so had to work out how to present my very real disability in a way that would meet their criteria.

Sometimes my disability isn’t defined by others, it’s simply ignored because it’s an ‘invisible’ disability. People don’t see me as disabled so even when I explain and request accommodations, they are often disregarded. For example, I’ve explained to my real estate agent that I can’t use the phone due to my disability. Every email I send her is prefaced with this. Yet every time she either calls me or tells me I should call her, as though it is nothing, but it has an extremely negative impact on my wellbeing.

[Rhye]

@still_bookish  I can relate to the correlation between accepting your disability and being kinder to yourself ... living with a disability can be tough, it's made tougher still when you're in a daily struggle with accepting it.

I love the sentiment you shared when you said, "Acknowledging it makes it easier to give myself credit for the things I do achieve (even when that is only surviving)." Did you have any insight into how to reach that place of acceptance within yourself i.e. what worked for you?

The timeless saying, "you need to love yourself before others can love you" I think relates to @TideisTurning question "how do I define disability for myself?" I believe that if we model to others how we define our disability, it can go a long way in how the world defines our disability.

Carly Findlay is a great advocate and role model in this respect.

[TideisTurning]

@Appleblossom I want to thank you for sharing such deeply personal, difficult and traumatic experiences. Such experiences can be a huge contributor to shaping the way we see and feel about things, especially things that relate to us, including how these might, or might not, be intergrated into our identity. From what you've described, it sounds there are many important things that make you, you, including your dedication to your work. 

@periwinklepixie you've raised such an important point about internalised ableism! Such a nasty beast to try to grapple with and in some cases, a horrible example of internalising the stigma projected by others. I also love so much of what you've said; about identifying as disabled creating a path to discovering an intersection between your own experiences and the limitations placed on you by the world, and learning to recognise your strength and resilience. It is so incredible the impact that's had in letting you feel kinder toward yourself through times of struggle! 

@BPDSurvivor what you've said really highlights how dis/ability is just one part of you as well as the differences between your own views of it as opposed to those of others, which seem way more deficits focused (and kind of yuck if you ask me!). I also really like how you've said 'disabled by'. For me, this helps separtate an individual from disability a little, enough to highlight how, contrary to how it may sound or feel sometimes, those with disability are not the problem. The problem is the problem, and in many cases, the problem is with other things external and separate to the person. 

@chibam thank you so much for highlighting the differences between internal and external factors and explaining how these may impact someone, and also how this contribute to a definition of disability for you. A definition which makes a lot of sense to me! The point you raise about disability seeming to be defined by a need for help is a really interesting one which doesn't sit quite right for me either. Everyone, regardless of whether they have a disability or not, will likely need a little help at some stage in their lives! While it didn't turn out to be the right fit for you, it sounds like the brief experience you had with the disability community was valuable in cementing that understanding of what disability means for you. 

@still_bookish, I really appreciate the way you've phrased that- disability can still have a great impact, but is not defining as well as your use of 'impair' and 'impairment'- I've found this to be such an important word in coming to my own definition of what disability means for me. Having a disability be not as noticable or 'invisible' can be so challenging! I'm so sorry to hear that's meant sometimes for you, your needs do not seem to be heard or respected- it's not only frustrating, but also just plain invalidating. 
@Rhye thank you so much for your wonderful take- "if we model to others how we define our disability, it can go a long way in how the world defines our disability" ❤️❤️❤️ and also for sharing about Carly, who I feel is an awesome example! 

From what everyone has said, the importance of language is abundantly clear. I want to acknowledge and thank all of you for the care you have put into your choices of language in writing your responses to our last set of questions, as well as in sharing some really personal experiences. We will touch more on language in questions still to come, so be sure to stay tuned for that! 

[Appleblossom]

Thanks @TideisTurning 

Beginning to think that denial of disability has been as  much a problem as anything in my life.  

[TideisTurning]

Part 3: 

One huge barrier faced by many with disability, in terms of how they might define and identify with disability, is assumptions. As many have highlighted in responding to the last question, others may try to define what disability means for someone without allowing opportunity for the individual to define it for themself. The old spelling rule rings true for me with this- when you assume...    

Questions:

• What are your experiences in relation to assumptions and disability? 
• Do you feel people jump to conclusions about you when they find out you live with disability 

I'll tag those who have supported my last post and contributed to the discussion 😊 @Appleblossom @periwinklepixie @BPDSurvivor @chibam @still_bookish @Rhye 

[Appleblossom]

Yes, whenever I disclose.

[BPDSurvivor]

@TideisTurning @Appleblossom @Rhye @still_bookish @still_bookish @chibam 

Questions:

• What are your experiences in relation to assumptions and disability?

Assumptions (stereotyping) can be both helpful and harmful.

Harmful in that:

- it sets limitations on a person's abilities

- reduces the expectations of people

- stereotypes/labels/categories people despite there being a spectrum of severity

- doesn't focus on strengths

Helpful in that:

- you don't need to start all over again each time when talking about your challenges

- helps with systematic funding

- directs you to supports for your disability

- can create a community for people with similar challenges

Ive experienced both the helpful and harmful.

• Do you feel people jump to conclusions about you when they find out you live with disability 

Yes... people definitely jump to conclusions when they hear 'mental illness'... like I am some inferior being!

[still_bookish]

What are your experiences in relation to assumptions and disability? Do you feel people jump to conclusions about you when they find out you live with disability?

People have a lot of preconceived ideas about disability. There is so much ableism in the world. As I mentioned earlier, most people completely disregard my disability, even when I disclose it. But I do find that, if that’s not the case, then often people decide that ‘disabled’ equates to ‘totally lacking any sensibility and knowledge’. They decide I am useless and unable to function without assistance—when in reality, I’m an independent, university-educated person who has been making her own way in the world for decades. Disabled people are people. We are all individuals. Speak to us, listen to us, hear us. Don’t make assumptions. (If only it were that easy.)

Back when I was still able to work, and also while I was studying, I always felt like I had to prove myself before disclosing my disability/mental health issues. I knew that after disclosure I would be judged and treated differently, and if I’d had the opportunity to prove I was capable first, I stood a better chance of a good outcome/experience going forward.

I think disabled people are often underestimated, but if others just listen to what we need in order to participate (be that work, study, or in social spaces), and provide those accommodations, they’ll find out that we’re able to contribute as much (sometimes even more) than anyone else.

[still_bookish]

Thanks for your response, @Rhye. To answer your question about how I am sometimes able to be kinder to myself because I’ve accepted my disability … I don’t know that I’ve mastered it yet. Applying for the NDIS involved getting lots of evidence of my disability (plus continually having to prove I am still disabled again and again), so I have quite a few ‘official’ reports from various health professionals that clearly spell out the severity of my disability. That makes it harder for my inner critic to argue with. All of my impairments are clearly stated in black and white. I guess that helped a lot with accepting that, yes, I am disabled.

The being kinder to myself thing … to be honest, I’m not so good at it. I struggle a lot with self-hate. But I’m very kind and compassionate and empathetic towards others. I try to challenge my thinking and defer to my ‘healthy adult’ (schema talk for anyone not familiar with the term), that is, the rational part of my brain that can look at the evidence when I’m beating myself up and say ‘hey, your struggles are legitimate and valid.’ And then I also try to consider how I would think about someone else who was in my position. I’d be nothing but supportive and encouraging to anyone else, so I attempt to give myself credit as well when I do achieve things. I'm not always successful. It’s definitely a work in progress.

And I guess another thing, for me, that came with accepting that I was disabled was connecting with the disability community (via social media). Hearing about what other disabled people have faced or are going through makes me feel so much less alone and I can see that other people with similar conditions to me are facing similar challenges (ie. it’s not just me).