Two simple trick you can do to make lives of disabled people easier.

 

I want to talk about ableism, how it works, and what you can do it, to diminish it. First, I want to thank you that you already did a lot to end ableism – because you come to this event. I am not sure if this course is an course which you need to finish your studies. If it is, I am now in somehow reversed position as normally I am while seeing medical professionals, which can be interesting experience . I migh also be speaking about some things as child abuse and medical neglect. I will try to mitigate the inconvinience caused with this emotionally charged issues that If you would want me to stop, I would stop, and I will ask Radka to put here a link to my blog, where the text is. I am on my mobile, so I do not link.

I want to discus ableism as a reality, in which disabled people live, and that migh make their lives worse.I will show you, how ableism was affecting me, and that some forms of ableism might directly or indirectly contribute to worsening my health. Also want to make some suggestion what you can do to not perpetuate ableist behavior, and what you can do for people, who are experiencing it. Its sometimes really easy and might have big effect.

I will define ableism as discrimnation in favour of able bodied people, in which I cite Oxford dictionary, and I will also show difference between social and medical model of disabilty, as described by Mike Oliver (2006).

Oliver in his work „The social model of disability: thirty years on“ describes medical model as situation, where the suffering of the disabled person is inntrinsically linked to that person, their health, and diagnosis. They are broken, they need to be cured. Nothing else matters. The best thing that this person can do is to submit to professionals, and if they are behaving in the right waym they going to be cured. They need to change.
For me it means: gender, interests, line of work, going to trance festivals, being a DJ, this all is erased. The only way to regain identity is to be cured, to regain ability to walk without any means of support, and also to not need anyone to lift me up from sitting position. It also allows my mother to beat me b/c I do not exercise enough, and its my problem, not hers. I certainly deserve it. It also allows medical professional to deny me lifting from sitting to standing position when I have broken ankle and I need help. No one else than me needs it, so I should not need it. I am lazy and should start to exercise, to be able to stand up with one working leg.


In the social model the problems are external. Disability is barriers made by enviroment. (Oliver again). Disability is a product between impairment and enviroment, in which person lives. Disabled people are not „wrongly assembled“. The barriers are inacessible buildings, no accomodations at workplace or unrealistic expectations of other people. Its the society who should change, not the individual. There is a distincion between diagnosis (Impairment) and Disability per se, where Disability are the ways in which society needs to change.

You probably can gues how the story looks now: I do not deserve to be beaten. I do still have my gender, I am still a DJ, and if I am not disabled (by society) it means if people like my music, I have a gig. Clubs are accessible – from toilets to podiums. No one denies me assitance in hospital. So I am not so scared from hospital, than I moved home, and made things worse by crawling on the floor and infecting the wound.

Social model migh be limited. Of course I needed to exercise (but not to be beaten, and shamed, and definitelly not over my limits) The another problem is, that fatique, pain and shortness of breath does mean that despite people want me to play in their accessible club, I might be too tired or sore to come, I could have a hypercapnia headache and throw up and still not come. This is the stuff I have to come of terms with. Newly spinal-injured person will almost inevitably require spinal stabilisation, rehabilitation, and possibly counselling. After that we should look for accessibility options – of course the newly spinal injured person will have easier time to live in a society, where accessible toilets are the norm. Please check the work of Shakespeare & Watson (2002)“ The social model of disability: an outdated ideology?“ for more info about integrating social and medical model.


From examples above you could already see the subtle and not so subtle works of ableism. I will now move to fresh research of Nario‐Redmond, Kemerling, Silverman, A. (2019), who were examining how ableism affect people. They had fairly robust sample of 185 internationally sourced disabled people. They used ix open‐ended questions to assess some of the manifestations of ableism documented in the literature. They have found that experiences with paternalistic forms of ableism were among the most pervasive followed by inspirational, hostile, envious, and dehumanizing forms while fears of becoming disabled or “catching” disability were less commonly reported. Furthermore, some forms of ableism (e.g., infantilization, unwanted help, and invasions of privacy) were more common among those with visible impairments whereas invalidation and accusations of fraud were more common among those with less apparent conditions.

Now I want to tell you some suggestions what to do. First and foremost – the people who have less visible impairment migh already hear that they are a fraud. I had diagnosis of cerebral palsy. There might be others with similar experience. Even the name (cerebral palsy) was so horrible for me, I could not even tell it. So if you have someone with CP, and they are not getting better, and hypotonic, you might think that there is not something wrong with that person, but with diagnostic test. I had „normal“ EMG in 15. I had deffo not normal EMG at 33, my doctor after second told me that I am „hard to stimulate“, whatever that means. As a sound engineer I know that I definitelly did not like the noise my muscles made, or it would be really problematic.

What I am currently doing is distracting myself from flashback. Its really great coping strategy, but it migh be not enough – it is enough now, it was not enough in my 33 years.

So please, please, especially if you work with parents with „lazy“ kids – believe this kid that she or he is doing enough. Believeing the „lazy kid“ even though it does not show on test might be revolutionary, and a life changer. You can hardly tell that kid is being abused – most shy kids are just shy, especially talking to a doctor. But not many kids in therapy are lazy. Please presume innocence of the kid, or adult.

Second think is people who are really, really visibly impaired. Wheelchair users, people who use trachs, people who use Bipap and what not. Believe our agency. Please presume competence here. Competence to understand. Even if we cannot speak, use augmented communitacion tool, or have some other than verbal means of expression. Do not babytalk us. Do not be surprised that we are depressed – or are not. When I have found a doctor who was believing me, my depression diminished. I am happy – he was not the shoolyard bully, he was not a university teacher, who told me that I cannot go to an exam, because the exam is only for the students who failed once. (And so I lost 10 years on Masaryks university.) So do not be surprised we have lives besides being disabled. I know that doctors complain that old people come here just to talk. I definitelly understand that you want to save lives (and not listen to how the snails ate their tomatoes). Sometimes, listening saves lives – if you have time to make rapport, your patients might tell you more, and making rapport migh be as simple as knowing their name, not only diagnosis.

And please, believe people who tell you, that the stuff I was talking about was, or is happening to them. Or any for of ableism – ableism can take many forms. Ableism might hypothetically affect event parent, as society subtly or not so subtly expect „normal“ kids.

Thank you for your coming, and maybe if you love trance music, check my socials, also we have a virtual trance event at 13.12.2020 and I will post in tuesday more info. I would suggest you check more works by Mike Oliver, Tom Shakespeare, and the great blue ocean of disability activism, disability studies, and maybe we will meet on accessible rave after this ends? Both covid and ableism?

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Nario‐Redmond, M. R., Kemerling, A. A., & Silverman, A. (2019). Hostile, benevolent, and ambivalent ableism: Contemporary manifestations. Journal of Social Issues, 75(3), 726-756.

Oliver, M. The social model of disability: thirty years on. Disability & Society [online]. 2013, vol. 28, no. 7, s. 1024 – 1026 [cit. 27. 7. 2014]. DOI: 10.1080/09687599.2013.818773. Dostupné z:

http://dx.doi.org/10.1080/09687599.2013.818773

Oliver, M., Sapey, B. Social Work with Disabled People [online]. New York: Palgrave Macmillan, 2006, 233 s. ISBN 9781403918383. Dostupné z:

http://www.academia.edu/908623/Social_Work_with_Disabled_People_

Shakespeare, T. & Watson, N. (2002) The social model of disability: an outdated ideology? In: Research in social science and disability, volume 2, pp. 9–28.