61 replies to this topic

[Coops]

I noticed we have a lot of threads on various 'isms'. 

Have you ever experienced ableism? Do you think it's a pervasive issue that's rarely discussed? What does ableism mean to you? Do you think there is no such thing as ableism?

 

Discuss. Please keep your shit civil though.

[Emily]

I don't think this counts but my stepdad has RSD (reflex sympathetic dystrophy) in his leg and more (brittle bones that break if he steps the wrong way) so he's on disability. The disability office (IDK what it's called) wanted to settle with my parents but only offered them half of what he was supposed to receive so they said no, obviously. So basically they had a private investigator stalking our house for a week, trying to catch him doing something wrong so they could give him no money at all. 

[Coops]

I don't think this counts but my stepdad has RSD (reflex sympathetic dystrophy) in his leg and more (brittle bones that break if he steps the wrong way) so he's on disability. The disability office (IDK what it's called) wanted to settle with my parents but only offered them half of what he was supposed to receive so they said no, obviously. So basically they had a private investigator stalking our house for a week, trying to catch him doing something wrong so they could give him no money at all. 

I've heard horror stories of people SSDI saying they are stalked at their homes, where investigators try to catch them doing stuff they view as 'abled' enough to no longer qualify as disabled. I absolutely think this qualifies as a form of ableism. Investigators aren't really equip to understand medical conditions and with disability people have varied days, good and bad, and to revoke for a good day is absurd. That's insane. I'm sorry your family went through that.

[Emily]

I've heard horror stories of people SSDI saying they are stalked at their homes, where investigators try to catch them doing stuff they view as 'abled' enough to no longer qualify as disabled. I absolutely think this qualifies as a form of ableism. Investigators aren't really equip to understand medical conditions and with disability people have varied days, good and bad, and to revoke for a good day is absurd. That's insane. I'm sorry your family went through that.

 

It was really creepy. I remember peeking through the garage door window to see where he was. My step dad would go to the grocery store and he would follow him. My mom actually asked him why he was there, and I think someone in the neighbourhood actually called the police (creeper in a car watching houses, who wouldn't?) He told the officer it was for a child custody case (I think they're not allowed to actually say why they're there), but the side of the street he was facing had no couples with young children, all children that had moved out, and the other side of the street had families that were all still very together. So bullshit. 

[Nanarie]

Ableism isn't something I thought about at all until my mom started having knee problems and can't walk up and down stairs. Every time I'm out with her I realize just how painfully difficult it is to to find escalators, elevators, ramps, etc. and generally get around without using stairs.

 

I think a lot of times people associate disabilities with problems you can physically see ie. amputations, being in a wheelchair, etc.  which is why people get harassed for "not being handicapped enough" (???) such as having a handicapped tag but not having a disability that's obvious to onlookers. In fact, I never really considered my mom disabled until recently, because she looks fine. 

[Coops]

It was really creepy. I remember peeking through the garage door window to see where he was. My step dad would go to the grocery store and he would follow him. My mom actually asked him why he was there, and I think someone in the neighbourhood actually called the police (creeper in a car watching houses, who wouldn't?) He told the officer it was for a child custody case (I think they're not allowed to actually say why they're there), but the side of the street he was facing had no couples with young children, all children that had moved out, and the other side of the street had families that were all still very together. So bullshit. 

Yeah, it's disturbing as fuck what they can get away with because they are 'investigators'. How would that not be considered harassment in any other setting, you know? Our society really treats disabled people abhorrently, in my opinion. 

 

Ableism isn't something I thought about at all until my mom started having knee problems and can't walk up and down stairs. Every time I'm out with her I realize just how painfully difficult it is to to find escalators, elevators, ramps, etc. and generally get around without using stairs.

 

I think a lot of times people associate disabilities with problems you can physically see ie. amputations, being in a wheelchair, etc.  which is why people get harassed for "not being handicapped enough" (???) such as having a handicapped tag but not having a disability that's obvious to onlookers. In fact, I never really considered my mom disabled until recently, because she looks fine. 

 

I hear that a lot from people - that they've never considered it until they've directly or indirectly experienced it. Do you think it has made you more compassionate because you've seen what your mom has to deal with? And do you think your definition of disabled has changed since then?

 

It took me a long time to really 'own' my disability. I didn't identify as such for a long time because Ehlers-Danlos and Chiari and multi-morbid conditions are invisible. I still really struggle with not equating my worth with my physical ability. It's very hard some days.

[Ladida]

My mom has AVN, which is slowly killing the ball joints of her legs, and also has collapsed discs in her back. She looks fine, but is in pain all the time. It has made me more compassionate towards people in general - I wonder what might be afflicting them beneath the surface, both physically and/or emotionally. So far, my mom hasn't been discriminated against, and she's still able to work without her condition affecting her performance.

 

Coops, your body is a vessel. It's a part of you, but it doesn't define who you are. Your thoughts and actions do   Stay strong!

[Nanarie]

I hear that a lot from people - that they've never considered it until they've directly or indirectly experienced it. Do you think it has made you more compassionate because you've seen what your mom has to deal with? And do you think your definition of disabled has changed since then?

 

It took me a long time to really 'own' my disability. I didn't identify as such for a long time because Ehlers-Danlos and Chiari and multi-morbid conditions are invisible. I still really struggle with not equating my worth with my physical ability. It's very hard some days.

 

Yes to both.

 

It's really sad when my mom keeps apologizing because we have to find different paths or when I see people giving her dirty looks because she's blocking their path or something. I know a lot of people have like a "gtfo my way" kind of mentality when they're walking around but it's definitely made me more mindful of others and my surroundings. 

 

As for my definition of disability, it's definitely been broadened. I think not considering people with invisible disabilities is akin to saying someone's not depressed because they don't look sad. I'm not that person and I have no idea what shit they're going through in their life.

[Padme]

I read a comment on reddit awhile ago where a user shared that he saw a man on public transit using his iphone, texting/making calls/playing game and realized that the man was blind. I think companies who go the extra mile without having to are really admirable. Steve Wozniak said that it was he & Steve (Jobs) goal so that a blind man would be able to use their devices (before iphone was ever conceptualized) much like a regular visioned user.

 

I think Facebook taking strides to have photos described better to blind people is also incredible.

 

I feel similarly about other disabilities. I myself try my best to be more accommodating & respectful of those who need adaptations in any way throughout my day (work, home, grocery shopping, etc.)

 

There was a campaign through where I live that really focused on saying that not all disabilities are visible. I sometimes have issues with my body flair up and they aren't anything you can see but it makes it really hard to stand for long periods of time and I really appreciate when I don't have to explain myself to people.

[Swar]

I don't have much knowledge on the matter, I have to admit, but one thing I often see if people forgetting how disabled people aren't just their disabilities.

The only disability that I really think I have some experience with is Down Syndrome. There was a guy in my class that had it, and we studied together for 4 years. When I first met him he was 40 and I was 10.

 

I remember being a bit scared of him at first, but after a couple months my view had changed completely. And for a kid to grow up with someone so "different", I think it was very important for me to become who I am. He was incredibly lovely (I haven't seen him in about 3 years, but I'm pretty sure he's still awesome), really friendly and quite talented. Unfortunately his family wasn't the greatest (my father was a teacher at our school, so I had some inside information), they treated him like a baby. I don't blame them though, it's not easy. But at least here in Brazil things are getting better for people with disabilities in general.

 

Anyway, what I'm trying to say (I suck at this lol) is that disabilities don't define a person, which is something people still have trouble understanding. It's just a part of them.

[Tetiel]

I have a friend who is autistic and through her, I've gained a huge perspective about what it's like. Ableist organizations like Autism Speaks are absolutely horrible because unlike their name implies, they don't listen to people who are autistic. Their mission is to cure what they consider a disease but many autistics advocate that they are instead a part of neurodiversity and they happen to not be neurotypical. Autism speaks not only supports finding a cure, but also a way to prevent autistic births from happening, a mission that some in the autism community believe is like promoting genocide. Very often, the focus is on the parents and how "hard" it is to be a parent of an autistic child, often speaking like said child isn't in the room. Just because someone is non-verbal or can't easily express their thoughts, doesn't mean they can't listen and understand.

It's actually -really- sad how autistic people are treated in today's society. The anti-vaccine movement calls them damaged children. Many medical outlets call them diseased. Yet, does anyone ask an autistic if they want to be "cured?" I was thinking of going into neuroscience for a while to focus on early childhood disabilities like autism to try to find a treatment to help calm down overstimulated nerves, but then I actually asked someone who was autistic and they said they wouldn't take it if they had a choice. They said that when the world was quiet, they could see the most beautiful patterns and connections, things they know allistics can't see. They wouldn't want to ever numb that aspect of them and lose what makes them who they are.

I get that. I really do. It's too bad more people don't take the time and actually have a conversation with someone that's autistic before making vast judgments. Oh, and before there are comments about the non-verbal thing, many autistics communicate beautifully by typing instead of speaking and that's primarily how I've gotten to know some of them as adults. Otherwise, I primarily worked in autism and lifeskills classrooms as a substitute paraeducator.

[Kaddict]

I came here to say pretty much this about having autism myself. 

 

It feels like no one wants to hear our voices on literally anything, it's like they think we can't think for ourselves. Or we have no self awareness, or something. I don't really know what they think. 

 

And don't even get me started on autism speaks, they sympathize with mothers who kill their autistic children. 

 

People who want nothing more than a cure terrify me. As much as it hinders me in life, I wouldn't want a cure. It'd change everything I am. I know NOTHING about how to behave socially. With an understanding of how quirky I actually act around people, I'd never talk to anyone again. Not to mention, I'd lose the one thing I actually like about myself. I pretty much live in a fantasy world, I wouldn't have the creativity to follow my passion of making video games if I wasn't autistic. 

 

It's like, they decide for you what they're going to do with you and it's fucking horrible. You feel stripped of your own voice, and basic humanity. 

 

I also have physical disabilities, and because I don't mention it very often, people assume that it's not really a thing. Or my particular favorite "You're too young for chronic pain!" That's always nice to hear. 

This is actually insanely interesting to me. Thank you for sharing @Aria !

Can I ask you a few questions? These are purely to satisfy my curiosity that you piqued. Feel free to either not answer or respond in PM if it is too obtuse of me, or personal for you.

 

My questions: Before I start, I totally understand the damage that groups just seeking a cure do. That having been said, if there was a magic pill that was optional to take a guaranteed a "cure" of autism, you wouldn't take it, because it is part of your identiy (if I read your post correctly). Could you expound upon this? And, would it be similar if you were deaf or blind or a paraplegic? (I understand that this is comparing apples to oranges, since being blind or paralyzed in no way equals being on the autism spectrum). Anyway, I don't really know you, but you seem quite high functioning. Would you feel the same if you weren't high functioning? 

Anyway, thanks for sharing. And if this makes you uncomfortable, I will delete this and replace this post with a random of a random topic from clicking 7 random links away from the wiki page of ableism.

[Kaddict]

I don't mind answering questions. I feel like if I help people understand, they'll understand the disorder better. 

 

1. I believe it is, it's something that defines us as who we are. There's the stereotypical reason for me there, a lot of autistic people have one thing they're extremely good at. I'm afraid of losing mine because honestly, it's all I really have going for me you know?

 

2. I wouldn't really compare it to that at all. I actually have deafness (Partial.) And I'm nearly legally blind. Those I would change as soon as I could. That's something to me that's only a hindrance. There's no benefit at all, and it makes my life further difficult.

 

3. I don't really think I'm all that high functioning. I can hold a conversation and I'm good with language, but I'll never be independent enough to take care of myself because my motor skills, and judgement are both extremely poor. I also can't do math in any way shape or form, so I can't handle my own money either. I'll also never be able to drive. I'd say I'm somewhere between like high and medium I guess? Or maybe it just feels more extreme to me because I'm enduring it myself and I can't know how it feels to be any other way. 

Thanks again @Aria, it really does help to get a good perspective from someone. I know plenty of people who are autistic, but none that I am close enough with to get honest discourse from, since I think talking in person is much more intimidating.

Follow ups: What is the thing(s) you are really good at? And we were always taught in med school that "savantism" is more a rarity, but in my anecdotal experience, most people with autism are really good in a particular niche. 

So, if you could again be "cured" but retain the thing you were good at, would you do it? And/or would you like to be able to live independently? (The motor skills seem to be a part of a separate disease/disorder though, is that correct?)

[Padme]

 

2. I wouldn't really compare it to that at all. I actually have deafness (Partial.) And I'm nearly legally blind. Those I would change as soon as I could. That's something to me that's only a hindrance. There's no benefit at all, and it makes my life further difficult.

 

 

It's so interesting how different people who have one of their 5 'senses' disabled react to the question about whether they could cure it or not. My dad is 3/4 deaf (no right ear and partial left in his left) he would cure it in an instant. There are others who really believe their disability defines them. There's a whole circle of Deaf people who qualify for cochlear implants and don't want them. It's so shocking to most people who are able to hear from birth that anyone would reject being able to do so. That's a really complicated topic though because that circle is divided by those who are genuinely against being 'fixed' and those who don't want it to be seen as a fix but as a tool ( more or less.)  

 

It's really interesting to see in really small children that people have observed their behaviour change once they are able to hear. I watched a film on a baby who couldn't be soothed most of his infancy, when he got a cochlear implant he became a lot more calm and 'happy.' 

[Kaddict]

 I wouldn't say savant. Just better at it than other things. I've been told I'm really good at writing when I want to be. I'm judgmental of my own work so I can't really say if I am or not. My creativity is what I'm best with though. I've created whole worlds, and plan on making video games with them, which are in progress as of this time. I don't feel I would have done that, if I didn't have autism. I'm also stupidly good at puzzles sometimes. I'm trying new things recently as I finally have the confidence to start trying things again. No success there though. 

If I could keep my personality, and what made me me, I don't really know honestly. When I got diagnosed I was told my motor skill problems were from autism. I was unable to learn to tie my own shoes until I was 16. It's really awful. That part I want gone for sure. It's truthfully embarrassing to be as far behind as I am. I'm going to be 24 this month. And I can't even cut my own nails by myself. 

 

 

 

I've never actually seen anyone who thought of their deafness as a benefit. But I wasn't born with the deafness in the ear I'm in. It was from an injury so I think in that way maybe it's a different case. I can see not wanting to change something you've known all your life. And I can see why it'd change your personality. Every little thing that's a part of you defines yourself. Humans are really weird. 

Yeah, a lot of people in the deaf community refuse cochlear implants for themselves and for their children. Some of them are almost arrogant about being deaf, thinking that it is like a badge of honor or cool or better than not having the disability. It is odd, to me. I can't think of another group that is as intense as that community, off the top of my head.

[Coops]

I have a friend who is autistic and through her, I've gained a huge perspective about what it's like. Ableist organizations like Autism Speaks are absolutely horrible because unlike their name implies, they don't listen to people who are autistic. Their mission is to cure what they consider a disease but many autistics advocate that they are instead a part of neurodiversity and they happen to not be neurotypical. Autism speaks not only supports finding a cure, but also a way to prevent autistic births from happening, a mission that some in the autism community believe is like promoting genocide. Very often, the focus is on the parents and how "hard" it is to be a parent of an autistic child, often speaking like said child isn't in the room. Just because someone is non-verbal or can't easily express their thoughts, doesn't mean they can't listen and understand.

It's actually -really- sad how autistic people are treated in today's society. The anti-vaccine movement calls them damaged children. Many medical outlets call them diseased. Yet, does anyone ask an autistic if they want to be "cured?" I was thinking of going into neuroscience for a while to focus on early childhood disabilities like autism to try to find a treatment to help calm down overstimulated nerves, but then I actually asked someone who was autistic and they said they wouldn't take it if they had a choice. They said that when the world was quiet, they could see the most beautiful patterns and connections, things they know allistics can't see. They wouldn't want to ever numb that aspect of them and lose what makes them who they are.

I get that. I really do. It's too bad more people don't take the time and actually have a conversation with someone that's autistic before making vast judgments. Oh, and before there are comments about the non-verbal thing, many autistics communicate beautifully by typing instead of speaking and that's primarily how I've gotten to know some of them as adults. Otherwise, I primarily worked in autism and lifeskills classrooms as a substitute paraeducator.

I'm really glad you mentioned Autism Speaks. It's such a horrible organization. And don't even get me started on the constant dehumanization done by anti-vax nutters. It's one reason I'm glad my autism was ignored by my family because I got to avoid all those horrible support groups families drag their autistic children to so they can talk about how these kids ruined their marriages and lives. In some ways, the fact that I was diagnosed and ignored was a blessing, in others, it was shitty.

 

One of the huge issues with ableism and autism I've noticed is the concept of 'high-functioning'. I fucking hate that term, personally. I was diagnosed with autism as a child. I couldn't walk or talk, but I managed to catch up by the time I was 3, while still struggling socially. So, I was labeled 'high-functioning'. I went without help until I pretty much got married and could get help on my own. People assume high-functioning autistics don't need help, or their issues aren't as varied or severe, or even as important. I was labeled as just a little weird, despite full-blown meltdowns, stimming, sensory issues, and difficulty attaching socially to people. 

[NebulaChi]

Yeah, you lookin' good so you can't have a disability or illness that is getting in the way of getting a full-time job. Be honest now, you are really a lazy dole scrounger.... I got the Jobcentre Blue. #Invisible Disability.

 

It's sooo much fun "mooching" off the state.  I love the burning aching in my joints, face rash and feeling strange when I stand up for too long. The fatigue is just one of the many perks of my current occupation. 

 

Sometimes I just feel like saying to people "Go eat a housebrick, you smell like a blocked drain!!" ....  

Edited by NebulaChi, 23 September 2017 - 07:46 AM.

[Nymh]

Hahahaha yes

 

I am autistic and have been suffering for almost 20 years with an invisible but incredibly debilitating host of physical conditions.  Though once I lost a shitload of weight because I have had literally no appetite for two years and started falling over because of my neurological symptoms things became a little more visible.  But still by looking at me I appear to be a healthy, typical woman in my 30's.

 

I have been repeatedly, consistently told that there is nothing wrong with me.  My ex would not allow me to take care of myself properly, did not believe there was anything wrong with me and drove me to stay in high-output, fast-paced, stressful environments.  Even people who admittedly have their own disabilities sometimes do not believe that I am disabled.  I have had many conversations with people with mental and physical disabilities in which my autism, my physical limitations and my pain were questioned.  I have had people tell me to my face that I really can do the things that I say that I can't do.  A friend came to my house to visit when I was at the height of my illness in 2016 and was obviously outwardly disappointed in how messy my house was.  He knew that I had stopped working a few months before due to illness.  He said conspiratorially that he "got it, but come on, you can do the dishes."  As if he "understood" that I was just faking being as sick and in pain as I was so that I didn't have to work that year, but that I really could do more than I represented I could and should at least be taking care of my house.

 

And please, I don't even want to get started on how many doctors have dismissed me, told me there was nothing wrong with me, told me I was just depressed, told me it was all in my head, told me "welcome to motherhood," told me "welcome to adulthood," told me "welcome to being a woman..."  MOTHERFUCKERS with this PATRONIZING BULLSHIT

 

I used a wheelchair in Wal Mart for the first time the other day and an old lady gave me the rudest stank eye ever as she passed me.  This type of thing is why I waited so long to start using my cane and why I hadn't used a wheelchair yet until then.  I am considering making a sign to hang off the back of wheelchairs that I use that says, "Yes I AM disabled, but thank you for thinking I look young and pretty!"  I need these things.  I can't go grocery shopping without being in extreme agony - yes, PHYSICAL AGONY - the entire time, and then I have to spend hours or even days resting and recovering.  Yes I CAN do it standing up, but I will have SO MUCH to pay for it if I do... I SHOULD sit down to do it.  I can get so much more done both during the activity and afterwards if I sit.  And I shouldn't have to worry about being harrassed if I do!  And if I happen to stand up out of my wheelchair to get something off a shelf or get into the car, I shouldn't have to worry about people calling me a faker! 

 

Not everyone in a wheelchair can't walk.

 

I absolutely think that ableism is pervasive.  I think it is something that most people don't even think about, because most people don't rely on accessibility aids, and most people are neurotypical.  Most people don't even understand that these things are issues at all.  They don't understand that certain people have limits on what they can physically and mentally do, or that they need to operate within a special set of parameters to be able to do the same things.

 

The thing that gets me the most, though, is the thought that people seem to have that they can look at someone and determine if they have a disability.  YOU CAN'T.  The only thing that makes it easier to accept the old lady in the wheelchair than it is to accept me in a wheelchair is that she is old and wrinkly and I am not.  Otherwise there is NO DIFFERENCE.  In cased you missed it, a lot of old wrinkly people can walk just fine too!

[NebulaChi]

Yeah, those GP'S just love to send us around in circles in the hope that we get soo frustrated that we just bugger off to another surgery or take the gamble and allow them to attach mental health labels on us like a sadistic game of pin the tail on the donkey. Allow them to turn us into pharma cash cows so they get kick-backs and stuff. Stupid really because you can't change your mind and just get stuff taken out medical records. The stigma is permanent, what employer is going to want you? Taking meds for something you don't have is insane, in the desperate hope that you might get better treatment and get listened to if you allow them to abuse you and financially exploit you as a guinea pig instead of a respected and cared for human being who is a patient of theirs.

 

suicidal ideation

 

Tardive dyskinesia

 

Tremors .  

Edited by NebulaChi, 25 September 2017 - 01:30 PM.