Show Notes: Episode 15 ”Invisible Ableism”

00:52 - Tiffany welcome listeners and co-host, Charis Hill

02:34 - Charis was diagnosed with Axial Spondyloarthritis in 2013

02:45 - They applied for Social Security Disability Insurance less than 3 years later

03:18 - Living with Ax-Spa has affected them mentally and physically

04:16 - Charis considers their identity as a disabled person to be very empowering

05:43 - The definition of disability is any condition that restricts one or more activities of daily living, which applies to anyone living with chronic disease

06:04 - Based on this definition, everyone living with an AiArthritis disease is disabled from symptom onset

06:40 - Most people have a moment where they decide to use assistive devices, and that is often accompanied by a change in identity

06:59 - Ableism is discrimination in favor of the able-bodied

07:40 - Ableism normalizes able-bodied and neuro-typical individuals as the privileged class

08:32 - The medical model of disability mentioned before is what is used to define disability from a legal standpoint

09:05 - The medical model of disability blames the individual for being impaired and views them as incomplete or in need of fixing

09:14 - The social model of disability places the responsibility on society to make the world more accessible to all people, regardless of impairment

09:32 - “My disease impairs me, but society is what disables me”

09:41 - Disease does not prevent someone from entering a building. Society’s preference for stairs prevents them from entering the building or being able to participate.

10:24 - Internalized ableism is a fear of becoming or being disabled

11:34 - Children are socialized to blame their body for not doing what society says it should do

12:10 - Using assistive devices allows disabled people more freedom to participate in life

14:18 - Tiffany has avoided using devices that could improve her quality of life out of fear of being judged by others 

17:41 - Part of the hesitation to use devices may stem from fear of letting go of their former identity

19:30 - Letting go of ability and losing privilege is a scary transition because you are completely shifting your outward appearance to the world

20:30 - Disabled people make up one of the largest minorities in the world, but also one of the most oppressed identities in the world

21:36 - Charis’ transition in identity began with using canes and wheelchairs in airports

22:13 - Why shouldn’t canes be accessories?

24:18 - Charis is sometimes politically motivated to park in accessible spots when they are not using their cane to normalize invisible disability

24:47 - If people confront Charis for parking in an accessible spot, they ask the person to please explain what a disabled person looks like

25:17 - Shortly after borrowing a wheelchair, Charis realized that they wanted their own wheelchair so they could be independent and participate in activities

 27:46 - Never assume someone needs help or put your hands on someone’s wheelchair without asking

28:20 - In the same way you would obtain consent before touching someone’s body, you should always have consent before touching someone’s wheelchair because it is an extension of their body

29:18 - Sometimes non-disabled people have a tendency to treat disabled people as though they are not fully human

32:25 - There is so much value in our culture associated with working, which feeds ableism

33:50 - When your disease is unpredictable, it can be challenging to identify as disabled because you don’t feel disabled every day even though you have that disease every day

37:31 - Many people in the disability community are shifting to identity-first language (disabled person) vs person-first language (person with a disability), but you should ask about preference because there is not universal agreement

39:44 - On average, it takes 3-5 years in the United States for disabled people to receive federal disability benefits

41:40- Disability in the US does not pay a living wage, so there is a lot of fear associated with relying on that to survive

42:01 - The US discourages people from applying for disability benefits by making the application process very difficult, long, and expensive and by denying half of the applicants

43:42 - Charis recommends that anyone who applies for federal disability benefits in the US should use a disability attorney from the start

44:14 - Tiffany asks any international listeners to submit tips for applying for disability benefits in other countries

45:00 - Universal accessibility - which can apply to any space - is a model that seeks to maximize usability for as many people as possible 

46:39 - Overcoming internalized shame - both as a society and an individual - is an important step to overcoming ableism

46:57 - At least 20% of the US population lives with a disability

49:00 - Buttons that make doors accessible to disabled people are not legally required to work in all locations in the US

51:00 - Eyeglasses are an assistive device that are now widely accepted by society, which demonstrates that shifts in acceptance can happen

52:20 - Tiffany thanks Charis for nominating the topic and coming on the show to lead the discussion

52:41 - Tiffany invites listeners to join the discussion on social media @ifaiarthritis on all platforms

53:00 - Listeners are invited to visit aiarthritis.org/podcast to submit topic ideas or get involved with the show

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