• Peta

We need to talk more about invisible disabilities

It is so important to highlight everyone in the disability community. Peta has an obvious disability however her experience of living with my disability is not that different to those with invisible or hidden disabilities.

What do you think? Do you agree?

You can ask Peta a question via:

The website: www.icantstandpodcast.com

Email: icantstandpodcast@gmail.com

You can follow Peta on Instagram @petahooke


References for this episode:

Invisible Disabilities Defined

Jameela Jamil on Managing the Invisible Illness Ehlers-Danlos and How We Can Create a More Inclusive World for People With Disabilities

OPINION: Dealing with invisible disabilities by Emmie Boese

The Hidden Disabilities Sunflower for people with hidden disabilities

What Hiding My Disability Taught Me About Care and Respect, Adam Cureton






Episode Transcript:


Peta [00:00:03] Hello and welcome to The I Can't Stand Podcast. The podcast, answering your questions on what life is like when you have a disability. My name is Peta and I'm your host. I have cerebral palsy and every week I love to answer your questions. If you'd like to ask me a question there are three ways you can do so. One, you can follow me on Instagram, which is at @PETAHOOKE, which is spelt P.E.T.A H.O.O.K.E. By my email, which is icantstandpodcast@gmail.com. Or from my website, icantstandpodcast.com. OK, without any further ado, let's get into it.

[00:01:03] This week's question came from Lucas, Lucas asked me.

Lucus [00:01:09] Peta. What are invisible disabilities? How did somebody experience an identity differ to those of us who have an obvious disability?

Peta [00:01:28] OK, so pre-warning, I obviously do not have an invisible disability, my cerebral palsy is very obvious. I use an electric wheelchair all day, every day. So I am very aware that this episode is somewhat flawed, coming from a person with an obvious disability. It is my aim to interview someone with an invisible disability in the future. But for the moment, I think it's really important to discuss what it means to have an invisible disability. Whether people with invisible disabilities are increasingly disadvantaged to those of us with an obvious disability or in fact, whether they experience advantages because they can hide their disability.

[00:02:26] So what is an invisible, hidden or unseen disability? An invisible disability is any physical, mental or emotional impairment that goes largely unnoticed. An invisible disability can include, but of course isn't limited to cognitive impairment, brain injuries, autism spectrum, chronic illnesses, including multiple sclerosis, chronic fatigue, chronic pain, hearing impairment, vision impairment, anxiety, depression, PTSD, and, of course, many more.

[00:03:10] A celebrity I didn't realise that had a disability was Jameela Jamil, you might know her, she was on The Good Place and she's a feminist and activist on Instagram. She herself has an invisible disability. And I'm going to do my absolute best to pronounce this. Ehlers-Danlos Syndrome now, apologies if I mispronounced that, I did Google it. Jamila characterised her condition as follows,

Jameela Jamil [00:03:46] "It's a severe lack of collagen, it means complications with your bones, teeth, joints, skin and your vital organs. You look like an absolute picture of health on the outside, and you have been subjected to a lifetime of doubt cast on you by people who haven't lived with an invisible illness".

Peta [00:04:09] This theme of people not believing you when you say you have a disability must be so infuriating. I can't imagine feeling like no one believes you, that you have a disability when it can severely affect you as much as many invisible disabilities do. Another article I read was written by Emmie Boese. She said the most common phrase people say when she says she has a disability is you don't look sick. You look fine. You're just getting old. People may look, quote-unquote, normal on the outside, but that doesn't mean that they don't encounter hurdles, challenges and also struggles just like I would. And I think it's important for me and other people to be cognisant that even if someone looks 'normal', able-bodied, nondisabled, it doesn't mean they don't understand what it's like to have a disability. They might themselves be more disabled than I am.

[00:05:31] But I understand why people with invisible disabilities might want to pass as non-disabled, there is so much stigma and discrimination when you have a disability. I can understand why people would want to avoid that at all costs. It also would be remiss of me not to say that there seems to be a subculture in the disability community. That some people don't feel disabled enough to be a part of the disability community. Because people with invisible disabilities are constantly being questioned about whether their disability is real or imagined and that they, in fact, have a disability. I believe that there is a lot of imposter syndrome going on. I hope many of you understand where I'm coming from when I say. The hardest part about my disability really has nothing to do with the fact that I can't walk, stand or transfer. I mean, yeah, it's really annoying. And if I could change it, I would, but. In actuality, the hardest thing is often the fatigue, the pain, the lack of toilet access, the discrimination and the low expectations society has for me. All those I've just rattled off to you are my invisible disabilities. I think every person with a disability has invisible elements to their disability, so just because a person doesn't have obvious aspects of their disability does not devalue their disabled ness. They shouldn't have to prove their disability to anyone because the invisible stuff is often the hardest to deal with.

[00:07:38] There's an interesting movement happening in the U.K. at the moment. It's called the Sunflower. For people with hidden disabilities. If you haven't heard of this. A hidden disability sunflower is a lanyard that discreetly indicates that you have a hidden disability and you may require additional support, help or more time. The great thing about the sunflower lanyards is it allows someone to interact with their environment in a way that best suits them. So, for example, maybe someone with autism could wear a sunflower lanyard, their lanyard, might indicate that they really value personal space, they don't like loud sounds and to give them more time when they try to explain something to you. All this sort of information is really important for the public to understand and see people with hidden disabilities as people. To give them further understanding and clarity of how to approach somebody with a hidden disability. I believe that most of the public. Don't want to be rude, they want to help. But they just don't know how so this sort of passive education, I think is really important. People with disabilities, I hope, with more visibility and representation, will feel more comfortable to identify as disabled. Because I know how much I've grown as a person through accepting my disability, and I really want that for anyone that has a disability. Hidden or obvious.

[00:09:44] If you have a hidden disability or you know someone who does, I'd love for you to reach out to me. While I know this wasn't a fully encapsulated episode, I hope you enjoyed it. If you did, can I encourage you to leave a rating and review on Apple podcasts or share my podcast with a friend it all helps for increased understanding of what it's like to live with a disability. Until next week bye.

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