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Kickstarting 2021 Disability awareness month please check out the video and info on this line. Our friends at the ARC are amazing
Hi all!
Hope all is well – so sorry it’s been a while since my last post! Things have been pretty busy but I’ve also been trying to research quality content so that I’m not talking about the same things twice to you all! 🙂
This blog means the world to me and so does all of your support, so of course I will continue writing until I literally run out of things to write about (let’s hope never!)
As a little update to you all:
I have been lucky enough to receive a scheme called Motability here in the UK so I finally have the opportunity to drive an adapted vehicle! This has been such a long time coming as one of my dreams since a little girl has been to be able to drive just like everybody else.
That’s why updates have been slow, so please forgive me! And if any of you see me on the roads, don’t be shy to say hi! Haha 🙂
Anyway, today’s topic is something I do feel very strongly about which is Disabled Workplace Discrimination.
I will also touch on discrimination in schools – as I know many readers may not have had the opportunity to work yet.
What is Disabled Workplace Discrimination?
Disabled workplace discrimination is discriminating against someone in a workplace purely because of their disability.
This can be things like not letting the disabled person have the same opportunities as everybody else in the workplace just because they are disabled; or not having an accessible workplace.
I am choosing to write about this topic because it breaks my heart to see workplace discrimination against disabled people like myself, it’s shocking to believe that it occurs but the statistics prove it’s much closer to home than we all think.
Here are some useful pointers from the helpful website: ACAS ORG
Direct discrimination
Is when someone is treated differently and not as well as other people because of disability. For example, an employer does not employ a disabled person just because it does not want disabled people in its workforce.
It breaks down into three different sorts of treating someone ‘less favourably’ because of:
1)Their own disability (ordinary direct discrimination)
2)A perceived disability (direct discrimination by perception)
3)Their association with someone who is disabled (direct discrimination by association).
Indirect discrimination
Can occur where a workplace rule, practice or procedure is applied to all employees, but disadvantages those who are disabled. A disabled employee or job applicant claiming indirect discrimination must show how they have been personally disadvantaged, as well as how the discrimination has or would disadvantage other disabled employees or job candidates.
In some limited circumstances, indirect discrimination may be justified if it is necessary for the business to work. For example, an employer may reject an applicant with a back problem severe back problem where heavy manual lifting is an essential part of the job.
So.. there are two main types of discrimination against disabled people in the workplace, but what are the statistics? According to these UK statistics from GOV UK – disabled people are actually less likely to be employed in the first place! Look at this:
Disabled people remain significantly less likely to be in employment than non-disabled people. In 2012, 46.3% of working-age disabled people are in employment compared to 76.4% of working-age non-disabled people. There is therefore a 30.1 percentage point gap between disabled and non-disabled people, representing over 2 million people.
And what about the statistics of discrimination at work? Again, from GOV UK
Disabled people are significantly more likely to experience unfair treatment at work than non-disabled people. In 2008, 19% of disabled people experienced unfair treatment at work compared to 13% of non-disabled people.
The statistics are horrifying, and we have to keep reaching out to businesses to ensure that they are treating all workers fairly!
The question is always “What can we do to help?” but in theses many cases I think the best message that I can send to fellow disabled people that happen to be experiencing discrimination is to fight back!
Please, report all discrimination to your local police force and keep logs of everything.. it is a crime to discriminate especially in a place of work, you are definitely not alone and the only way things can change is if we all come together to fight against this discrimination.
As for schools/education:
Personally, I have never experienced discrimination throughout my education history but what I did experience was a huge lack of ignorance from some teachers and peers.
As I have said sometimes before – I never felt fully comfortable joining in with sports activities and I did have some teachers really try to force me to join in, some even saying “I’ve taught amputees before, you’re just being lazy” which really did nothing for my already low self esteem.
On a whole my schools did try their best to include me and NOT discriminate, as most of you know I was born with only 8 fingers, and it’s common for children to learn to count to 10 on their fingers.. I had teachers put gloves on my hands so that I could follow the lesson which I look back and think was incredibly sweet!
I also wasn’t able to sit on the floor with the rest of my class for things like story time or assemblies, so I’d get to sit on a chair with a rest for my prosthetic leg (which at the time didn’t bend, just stuck straight out) again, I look back and think how lovely this was of my teachers.
I think that all teachers and tutors in education should have some experience with disabled students before they are thrown straight in to teaching, this way they will have vital first hand knowledge of the complications but also the heartwarming rewards that come with working with disabled students – the main message I’d send out to any teacher working with disabled students, or even students in general is please know every two disabled people are not the same! We all have different personalities and are not defined by our disabilities.
Why?
Rarely does inspiration come in a single defined moment of clarity where all your thoughts are defined into a single goal; becoming an advocate is one of those rare moments. It occurred at 0900 on September 6th 1996. Most parents would agree that your world changes when you have kids. When you have a child that needs an advocate that is exactly what happens. Its easy for me to point to when Devon was born for wanting to support the Down syndrome community, when your children are young you think about potential, you do everything you can to make sure they can achieve all that they can achieve. The reality of them growing up is much harder. This is particularly true when you have a child that has to apply for social security disability and you have to face the reality that no matter what their potential is there will be hurdles that you simply don’t yet have the tools to deal with.
My “aha” moment was the transition of Devon finishing hight school and beginning her college/transition program. Trying to figure out how much Devon was going to need to live and what kind of employment she had access to was a reality we were trying to face with as much knowledge as possible. Unfortunately, there is a tremendous amount of information regarding employment for people with intellectual disabilities. The numbers are terrible, not just based on how many people are legitimately gainfully employed, but how much they are paid. The line is clear in that most people with intellectual disabilities want to have an independent life. We also know that, for most, the road to independence runs through employment.
At the NDSS conventions, and our time with Down Syndrome International’s World Down syndrome day we have been exposed to several public service announcements (PSA) regarding inclusion and employment. Some were very factual and some very artistic, but all tugged at my part to try to be a better advocate for my daughter and family.
My desire to produce a PSA for the Down Syndrome Community began when we met Melinda Raebyen through a disability group asking for representation in music video about diversity. This was a project by Shui Productions is where people of different abilities, ethnicities, and genders would be represented in a project with a local band trying to promote inclusion and acceptance. Through the course of filming the video I was awed by the professionalism and artistry that this group of people brought to bear creating a thing of beauty and inspiration. Watching Melinda use this tool to express her vision I thought this would be the perfect vehicle for the Down Syndrome Community to send a message to the the puget sound population about what are loved ones have to offer. Inclusion and acceptance is a road to employment and independence and all of us deserve those opportunities.
Melding art and a message to create momentum towards a common goal was the intent. I wanted to help the Down Syndrome Community of the Puget Sound represent our loved ones in a way that we could all be proud. What makes each of us special is unique regardless of our chromosomes, gender, or color. The more we make this message clear the more all of us can enjoy the true potential our lives afford us.
What Tigers Have Taught Me About Relationships
I have been in a relationship with my boyfriend Tim for three years. We met online, and he has been very open and accepting of my disabilities and how they affect my life. I told him about my CP over g-chat a few days before we first met. His reaction was exactly what we would dream of as disabled people – acceptance. He has, and will continue to, be there for me when I go to the ER at any hour of the day, through exams, procedures, and hospital stays that make up my life. Unlike most men I encountered, disability was not a big deal to him. I was able to be myself, and not feel the awkward judging that usually comes with disability.
I don’t personally think there is anything overly astounding about that aspect of our relationship. Anyone disabled will likely tell you, the Tims of the world are a rare breed, and this is very true from my experience. Most are turned off by the idea of disability, and thus, dating is hard. Obviously, after three years, there is something that is going/went right to get us this far, but it hasn’t always been easy. We have both had to learn about how to handle a severe, often highly stigmatized, mental illness, and to accept that in order to thrive.
Along with a few other conditions, Tim has a mental illness called Borderline Personality Disorder (BPD), and, honestly, the name is horrific.I can understand why there is stigma involved, just based on the name alone. It is sometimes referred to as emotion dysregulation disorder – which is much easier to understand, and feels less judgemental. It is a disease full of highs and lows where the person struggles to manage their emotions and relationships. In a class I was in recently for loved ones, someone described borderline as like being in a relationship with a tiger. It’s amusing, but true. One moment, things can be perfectly relaxed, the next it’s the complete opposite, and later on things are relaxed again until the next provoking incident.
BPD highs and lows first showed up in our relationship about two years ago. We would have periods of time where I would be unsure if we would recover, and used to take those moments very personally – getting upset and frustrated. I couldn’t understand how one minute, we would be making plans for something, and the next would be ranting about wanting to not be together. I grew confused, frustrated, and upset each time this occurred. Eventually, I was able to recognize that the verbal outbursts came and went, and that, somehow, these things were just part of the deal. I didn’t know why, and we didn’t have a name for it at the time, but I could see there was something chemical that was clearly out of balance.
These patterns of intense highs and lows would continue sporadically for about 18 months before things changed. There were days I wanted to give up, couldn’t take it anymore, and dubbed it too exhausting and stressful to live with a raging tiger regardless of how much I cared about him and how positive things were when he wasn’t truly suffering. By this time, I was convinced it was some mental illness, and assumed it was bipolar disorder. I had also heard of a treatment I had thought would benefit him called dialectical behavioral therapy (DBT). With all this in mind, we realized the best solution was to get him into a program for mental health treatment. In the past, he had tried it, but like so many with BPD, they are misdiagnosed, treated, and misunderstood — even by professionals. When he isn’t having a moment, you would never recognize there were any illnesses affecting him. He’s the smart, calm, goofy person who suggested we build sandcastles on our first date (we went out to dinner instead), and not a raging tiger. This made it easy for him to fall through the cracks. It finally felt like we were getting somewhere when he was diagnosed with bipolar II, and began a course of treatment, though not very effective, was a good placeholder until he began his current treatment. It took many months of being on a waiting list, and finding a therapist which takes insurance, to get him into DBT.
DBT is specialized therapy for people with borderline. It is very intensive, and requires commitment and practice to be successful. The only fully effective treatment for borderline is DBT therapy, but we cannot believe the effect that medication has had on his life and our relationship. Professionals will tell you borderline cannot be treated with meds, but it certainly helps some of the underlying symptoms and conditions that occur along with it. It has been quite a journey to find the right meds, but he is two months into daily medications that allow him to break through the symptoms and focus on managing emotions and preserving relationships. In combination with DBT, I feel like I have my boyfriend back, and his parents have their son. Though the past 9 months or so have been the hardest of my life, I feel very fortunate to still have Tim around after everything we’ve been through. I look at it as mostly a positive experience. Sure, the physical and mental stress has been some of the worst, but I think it has taught us that we can be strong in crises.I hope that by sharing some pieces of our journey with borderline, it will help de-stigmatize the illness, and potentially support readers who have loved ones with this disease.
We went into this relationship knowing that I had a disability, but I don’t think we could have ever imagined the journey it would take discovering and managing unexpected disabilities on top of that. Borderline, in particular, is quite the challenge. It requires more patience, empathy and understanding, and open communication than any other interactions I have. Just like any disability or medical condition, you have to learn and adapt to new ways of approaching situations. I have to be aware when his ups and downs start affecting me, and work on self care to make it through. As I grow older, I know that my own disabilities will affect my life in different ways, and will then require more adaptation in how we do things. We will be able to take the lessons learned from adding borderline to the mix, and apply them to our future. I know that will only continue to be a positive as time goes on.
About borderline
https://www.nami.org/Learn-More/Mental-Health-Conditions/Borderline-Personality-Disorder
http://www.borderlinepersonalitydisorder.com/what-is-bpd/bpd-overview/
Class I went to for loved ones
http://www.borderlinepersonalitydisorder.com/family-connections/
About DBT
https://behavioraltech.org/resources/faqs/what-is-dbt/
By Amy Grana
Follow @APFFDJourney
Hi everyone! Hope you’ve all had a fantastic week, as usual.
Today I’m going to be talking about the few organizations and companies that purposely single out disabled people (not necessarily in a negative way) and discuss whether this is a good thing or a bad thing, in my opinion.
I’ll start off by talking about my own experiences of inclusion when I was younger, and how I feel this impacted by social life, school life and personal life in the future.
I was always happy to be involved with most activities in school – but sports was something I could never enjoy as I felt so self conscious about my disability that I wouldn’t be able to join in as well as everybody else. This was of course due to low self-esteem… but what would really upset me was the people who tried to force me into joining in activities JUST because they wanted to look good for persuading the disabled girl to join in.
As I grew older I withdrew from activities more as I didn’t feel I could compete in the physical aspects of them as smoothly as everyone I was comparing myself to, but does that mean I should be respected any less… or even, secluded from society? Of course not!
I haven’t had a chance to work in the community as of yet, but the thought of being paid less because I have a disability is terrifying. Once I am well enough and able to work in the community, I would love the same respect, treatment and pay as everybody else… I’m pretty sure everyone wants this, disabled or not.
This may be hard for you to believe… but there are STILL places in the USA that pay people with disabilities a lower wage than everyone else doing the same job as them.
I know, it’s disgusting.
There is a documentary called Bottom Dollars that explores this subject and focuses on a few disabled people living in the USA doing their jobs, it closely follows their stories.
It’s awful to think that in the 21st century there is still a wage difference – originally, this ‘lower wage for people with disabilities’ was bought out to persuade employers to actually employ disabled people; the fact it’s still around is unbelievably discriminatory.
In 2016, nearly 250,000 people are legally paid less than the minimum wage, on average, less than $2 an hour.
“Bottom Dollars” is an hour long documentary that exposes the exploitation of people with disabilities through personal stories and expert interviews. It also presents clear employment alternatives with competitive wages and community inclusion.
The name of the places that employ people with disabilities at this dreadfully sub-minimum wage is called a sheltered workshop. The term sheltered workshop refers to an organization or environment that employs people with disabilities separately from others. The term ‘sheltered workshop’ is considered outdated in the U.K. and the U.S., and increasingly in Australia. If even the terms are outdated, why are these places still running?
I couldn’t find many acceptable reasons but here is an opinion that I did find:
Many parents, guardians, and employees themselves say that the advantages of sheltered work-shops include that they are safer alternatives to outside employment, they are less demanding for people with disabilities in terms of work and social skills, they provide greater opportunities for fostering friendships, they ensure structure during the weekdays, and they ensure assistance for life without affecting disability benefits.
Safety has also been cited as a positive for workshops as many parents and guardians are concerned about the vulnerability of their loved ones in an integrated setting in the community.
I do see how they could be a benefit in the short term, and maybe even for training a disabled person in the very early stages of their first employment – but no way would I subject a disabled family member or even myself to somewhere that I wasn’t treated fairly by being given the minimum wage!
To make things easier for disabled people, employers could simply make their workplaces more accessible, invest in to specialized equipment that people with disabilities can use and more training exercises.
It’s about time the world woke up to the idea that disabled people are perfectly competent doing the same jobs as everybody else; most importantly doing the jobs just as good, making the same amount of friends and gaining the same amount of social skills as anybody else, so of course their pay should be equal. Our culture spends a lot of the time talking about equal rights but where are the rights of these disabled people that are getting paid pennies?
There have been studies that have found that people with disabilities that were working in sheltered workshops actually thrived when they were given the opportunity to work out in the community, surely this says something! As for the safety aspect of these sheltered workshops, I completely understand that many parents, guardians and caretakers feel at ease knowing their loved ones are being cared of around the clock while at work, but surely something could be put in place so that they could have a caretaker while working in the community? Or maybe they could be placed close to others in the workplace, so that they weren’t left alone? Either way, I’m sure something can be done to stop this disgraceful pay gap.
As many of you know, I live in the UK and I don’t believe there are any sheltered workshops here that pay people with disabilities less than the minimum wage, but that does not mean we can’t all come together no matter what country to fight against this form of discrimination. It’s so important as disabled people (a minority group) to stick together, help each other and not forgetting learning from each other. Maybe one day we can end this sort of discrimination and live happily side by side with everybody else! It’s time to get the world to wake up!
Have a great week everyone, I hope you enjoyed this post and would love to hear your thoughts on this topic. Join in the discussion on Twitter using #EnlightenNotInspire
source: http://eitas.org/wp-content/uploads/2014/10/Newsletters-Fall-2014.pdf
Bullet (Bee) Proof
As you already know by the title I have an awesome superpower. Some of my powers are just ordinary, like being smarter then my little brother. Another one that is pretty awesome is I can be in two places at once. Since I have an artificial leg, I can be really sneaky. Its not quite as cool as teleportation or anything, but I’m working on that.
In case you didn’t already know I have proximal femoral focal deficiency (PFFD). That is a really fancy way of saying one of my legs is a lot smaller. It didn’t really grow like my other leg so I had to have lots of surgeries so I could use my smaller leg with a prosthesis. I guess its not that special when you consider there are other superhero’s with bionic parts, but I have “skills” shall we say.
Anyway, enough of the background stuff. It seems like most days I figure out something that is cool about being me. I don’t mean because everything I do is awesome, but because most days doing normal stuff is really hard. When I figure out how to do hard stuff, its like yeah I am pretty cool, even if sometimes I am the only one who know how cool I really am. Except for mom and dad, that is. Mom and dad know how hard I try so when they see me being cool they are like, “look at her being really cool.”
Mom and dad know I really hate it when people call me special so they just nod and look at me with that “I know how cool you are” look with out saying anything. They know I that I know so we jus keep going.
I knew today was going to be frickin awesome. The weather has been bad so I was cooped up with my little brother for a whole week. He is getting old enough that he really smells bad, I mean like, please go take a shower smell bad. He wears the same clothes all week, even to bed. When mom and dad ask him to take a shower he act like its going to melt him. He lets his friends punch him in the arm on purpose, but he cant use soap? Whatever, at least today we can go outside and at least it isn’t as bad when we are outside, especially if there is a good breeze. I just have to make sure I stand on the correct side of him. Its like hunting on those jungle shows, now I understand what those guys mean when they say “down wind”.
As soon as I am outside I can smell the flowers, it is so pretty I completely forget that my brother is also outside. Unlike me he does not care about flowers, he wants to chase and yell, then throw, not necessarily in that order. Today apparently throw was at the top or the count so my wonderful scent of flower is now mingled with moist soil as I feel the dirt run down the side of my face.
“Dude, I am going to get you. Not cool.”
I could have decided to be civilized and tell mom. Then I could have continued with my appreciation of the flowers, but no way was I going to let my brother do that to me without consequences. I may be slower then him, but years of using wheelchairs and crutches has made my arms strong. He knows it too, cause he is running away already.
Our yard is small and I can heave a chunk of mud clear across it. So, before he gets to the door and dirt ball hits him square in the back of the head blowing mud all over him and the door. It was like the funniest thing ever cause there was blank space the size of his head inside the dirt blob on the door.
Before I can enjoy my victory mom is outside. “Kids come on you have been outside for five minutes, no throwing dirt, and Amy you get to clean the door.”
He looks over smiling at me, like he has won something, but we both know it was worth it, he won’t try that again, at least not till tomorrow.
I am strong, and cool, but there is more.
Anyway, he kind of sulks back towards me. “so what ya lookin at?”
“Flowers man, can’t you smell them?”
“Ya but they are just flowers”
Boys, seriously how can he me such a dufus, after being inside for like a week he can’t enjoy a flower.
“Yeek!”
Next think I know he is running all over the yard swishing his arms back and forth “Get away, get away, its a bee.”
He looks so funny, like he is doing some kind of dance with his arms and legs jumping all over the place. I barely can tell him “dufus its not a bee its a wasp”
See wasps have different bellies and stuff, plus there color is different. This is one those big ones with the big stinger that lives in the ground. As soon as he hears me say wasp he screeches and makes a run for the door.
Once the door slams shut I can see him with his round little face pushed up against the glass looking at me like I am on some other planet. I am sure he is thinking there is a dangerous mutant bug that will eat you or turn you into a zombie, get in here. I look at him with my head high, no fear. Mainly because I got scared last year and asked mr. James in biology about them. He told me that they were solitary bugs and didn’t usually bother people so I really should’t worry about it, they looked meaner then they were. I was still a little nervous, cause they really looked fierce, but I never got stung and plus I trust mr James.
He is still looking at me like I am a crazy person and I feel like a superhero cause I am out here and he is all scared and stuff. Except he keeps yelling something at me and pointing. Man my brother is crazy.
“Dude, I can’t here you man, what are you saying.” I say it real slow cause maybe he can read my lips.
He opens the door a crack “your leg!”
I Look down and right below my shorts is this huge wasp. They are way bigger, and scarier, up close. Just stinging and stinging the heck out my leg. At first I am like, he is stinging me, and I almost make a run for it. I can’t give my brother the satisfaction though, so I keep watching. That little guy keep trying, I don’t want to shoo him off and have him come at my face so I just watch as he sort of poops out and flies off.
My brother is still watching so I hold my arms up and show him my muscles, thats right man I am bulletproof, or at least bee proof. Don’t mess with me….this is just one of my many superpowers.
My thoughts on Ableism
By Amy Grana
Follow @APFFDJourney
Hi everyone! Today I’ll be talking about how I feel about Ableism, and giving you a pretty simple breakdown of what Ableism actually is.
This post may raise some differing opinions – mainly what is or isn’t ableist.. It’s important to remember that we don’t all have to agree to respect each others opinions.
As always, these thoughts are 100% my own and I’ll be writing from my own personal experiences only 🙂 Let’s start by giving a few examples of ableism so we can all understand what exactly ableism is:
Wiki definition: discrimination in favour of able-bodied people.
Some examples of discrimination against disabled people include no disabled access, seeing disability as a fault rather than a difference, and being apprehensive to interact with someone just because they are disabled.
Want to know the worst part? A lot of disabled people are subconsciously ableist towards themselves! Myself VERY much included.
I only recently discovered what ableism was.. I learned through twitter as I follow lots of others within the disability community and I had to research the word to find out what it meant.
It felt like everything clicked together for a moment.. I realised that so many of my thoughts were actually ableist against myself, and that the reasons I had felt uncomfortable around certain people (that were being ableist towards me) actually made a lot of sense.
I’ve explained this in previous posts, but I never accepted my disability until recently.. because of this, I used to have fears like will that person be offended if they can see my prosthetic leg? Will my family be embarrassed to be seen with me in public because I’m an amputee? Would my family/friends rather me stay indoors so their own friends can’t see that I’m disabled?
Of course, these thoughts are awful and even though I felt them about myself I would have NEVER made anybody else think those things about themselves.
The main turning point for me was actually realising what my reaction would be if I met someone with the same disability as me, that said they feel all those things.. I’d say they were wrong and their family would never want them to hide away.. so why was I being so harsh?
I don’t know why I was so ableist towards myself but I have an idea that it stemmed from my extremely low self esteem.. I hated myself because of my disability so I guess that seeped into every other aspect of my life, including believing things that were false.
These tough times really affected my mental health and I can see this now, I would never think those things anymore as I know that my friends and family love me no matter what – and have never seen my disability as a flaw, just a difference.
I’ve had people be ableist towards me having to use my wheelchair and crutches, acting as if my life is doomed just because I struggle to walk.
I’ve had people try to force me into sports that I really couldn’t do just so “I wouldn’t feel left out”.. but I didn’t! I didn’t feel left out at all and I felt like these people just wanted to make themselves look kind by including the disabled person in their sports classes.
I’ve had people call me an inspiration the second they meet me, which of course is meant as a compliment.. but it doesn’t make much sense, does it? They don’t know me, I could be a really bad person! Yet they see I’m an amputee and automatically assume I’m inspiring – even though they know nothing at all about me.
The worst part of ableism for me is people think they are entitled to know all about my disability because they can see it.
They see my prosthetic leg and come over to me (a complete stranger) and ask me how it happened.. I can’t stand this!
Once I had a taxi driver actually get visibly angry because I explained that I didn’t want to answer his question which was what happened to my leg.
As much as I can relate to many others experiences with this kind of discrimination I have to admit that sometimes I do believe ‘ableist’ goes too far.
An example of something that I disagreed with was a video that circulated online recently.
The video is of a baby that was born deaf, being given hearing aids for the first time.. it’s an emotional video where the baby clearly smiles as they can hear their mothers voice for the first time!
Unfortunately, I saw many people share the video calling it ableist and say that it was wrong to have given the baby the hearing aids because the baby should have made it’s own choice when it was older as to whether it should be disabled (deaf) or not.
I really disagree with this, I think the parents did the right thing in letting their baby be able to hear! And I would definitely make the same decision myself with confidence.
Just like everything in life, we all have differing opinions about complex subjects such as ableism so I’m sure there will be many that both agree and disagree with my post today.
I am very proud to be a disabled person at this point in my life, and once I learned what ableism was I made a commitment to myself to try my hardest not to use ableist words or phrases anymore such as: “are you deaf?” when someone doesn’t hear me, “are you blind?” when someone doesn’t see something, “you’re mad/crazy/stupid!” when someone does something out of the ordinary etc.
I didn’t use these phrases much, but realising these were ableist really put a lot into perspective for me as I do get uncomfortable myself when people say things like “you’re walking like you have a pegleg!” to people that don’t have a disability.. as if it’s something to joke about.
It’s natural to make mistakes, so sometimes I may accidentally say/tweet/post something that could be considered ableist, but I’m happy in myself that I’m trying my best to avoid this and be a better human being using better phrasing!
Maybe you’ve accidentally used phrases like this too and not realised! It’s OK! Forgive yourself and move on, we can always improve ourselves.
Thanks so much for reading, and I hope you enjoyed this post!
Confronting Ableism as a Disabled Person
By Christine Miles
Follow @ChrisDisability
I’ve never been shy about the fact that I’m incredibly proud of my identity as a disabled woman. There’s no hiding it. It’s in my Twitter handle for goodness sake. I own it. As I enter the last year of my twenties later this summer, I have been reflecting on my identity quite a bit. Honestly, I think I owe that in part to Sean and his writing – which you all get to read my perspectives on. In combination with other things, it’s gotten me thinking about how my disabilities are pretty awesome. Ok, fine, NOT all the time, as pain and feeling like a walking pharmacy is pretty stinky, but still. I have pride in raising awareness and helping others see the positives of disability. Ableism, and especially internalizing it, is a pretty nasty beast. The rest of this post will show the ugly side, and would likely offend the people I refer to because of how hard it is to confront it. I hope by sharing both ableism and pride, readers will learn something or think more critically about disability.
I was raised with an unconscious idea that using a wheelchair made you lesser, or that proudly identifying as disabled wasn’t something you did. I’m sure other people born with disabilities can relate to the idea that somewhere in early life someone mentioned to family that the potential of never walking was a fate worse than death. I’m fairly certain this conversation happened in my own family — what if she can never walk?! How will she be normal if she can’t walk! For the record, I walk just fine- other than my body moving through space in a way that is different to most. These days, I see friends in powerchairs zipping along and wish my legs could keep up! 🙂 However, this is how stigmas start, how children struggle with disability identity, and why I still know adults who would give up their disabilities if it were possible.
My left arm likes to, as best as I can tell, unconsciously bend and hang in mid air like a “teapot.” I think this is pretty common in people with CP, as I know others whose arms do this. When I was young, I was constantly told “put your arm down, you’re not a teapot/coat hanger.” Only now do I see the unconscious and veiled ableism in that statement. What was likely intended to be a statement surrounding my lessons from PT, comes across to me now as “you can’t leave your arm hanging like that! That’s not normal!” That’s where the idea of internalized ableism comes from. Even today, I’ll occasionally catch my arm bent, and the voice of that person telling me to put my arm down runs through my head. It’s hard to deal with. I think I’m beginning to break the habit though, as I recently saw a friend standing like this and I wasn’t thinking he should put his arm down. If it’s not that, it’s those times I tried to hide my CP by trying to change my walk. Which, naturally, didn’t work. My gait felt like a target on my back. If it’s not feelings about CP, it’s what friends called “disability hierarchy.”
The idea of this hierarchy is pretty simple. Because I’m not cognitively affected by my CP and I walk, I’m viewed as “better off” than friends with CP who do have academic struggles, use a chair, or need constant support. There’s this idea that intellectual disabilities are “worse” than others, or that people with disabilities like ADHD or depression are “not as disabled.” I’ll admit, with some unhappiness about it, that there are portions of this that I used to agree with. This is because my idea of disability used to be limited to conditions you typically think about- CP, autism, Down’s Syndrome, multi-ortho, d/Deaf, blindness etc. Disability wasn’t “that other stuff.” What I find troubling about this is how easily, I, as a disabled person, could be influenced to have ableist beliefs. Since then, I’ve discovered by being exposed to the whole picture of disability that the hierarchy is garbage. ALL disabilities are valid, those of us who identify are all disabled, but it looks different for each of us.
There’s an interesting project about implicit bias that has a place in this discussion. Implicit bias is the idea that “attitudes or stereotypes that affect our understanding, actions, and decisions in an unconscious manner.”. With that in mind, some universities have come together to create Project Implicit which is a series of tests which measures implicit bias to different situations such as race, gender, sexuality, gender and career, weapons and race, and even Donald Trump! It is probably fair to say there are many implicit biases that make up ableism and the disabled experience/interpretation. I’m glad there are tools like Project Implicit that are available to educate about bias. Hopefully in conjunction with other forms of education, the role of bias in ableism will help change the conversation. I don’t think it will surprise anyone to learn that I have a bias towards disability. The tests are fascinating though, and worth some of your time if you are curious about such things.
Moving from ableism to pride, a while ago, I was reading a letter from a family member in relation to my disability. This is the same person who made the comment about my arm. “I try not to think of [her] as disabled.” It read. Hearing this when I was younger felt positive, like I was “normal,” or something, in spite of this CP thing. All I felt reading it that day was sadness, and a strange sort of betrayal. I cried as I wrote back demanding to know where this came from and why they thought saying such a thing was ok. I know it’s a very literal way of thinking, but being born with a disability means I wouldn’t be who I am without it. I’ve learned to be very proud of that.
These stories of growing up disabled show me where I may have learned insecuritIes about disability. Add to that general peer pressures/challenges, bullying, and adolescence, and it’s a wonder I accept my disability as a point of pride at all.
So, how did I get to this point? Becoming involved in the disability community really changed my life. I started out volunteering with a disabled art class put on by a local nonprofit. There I felt truly comfortable because I was surrounded by people I related to. I eventually worked a stint in special education preschool and learned that was not the job for me. Though, witnessing a little boy with developmental disabilities dancing with and engaging the little girl who was blind will always be a highlight. One thing I can take from that time was reading a memoir by a woman with CP; Harilyn Rousso’s Don’t Call Me Inspirational. This was a defining moment for me in a way. She was in a helping profession, was an advocate and activist, and made art. She felt like me. In many ways, her story could’ve been mine. My favorite thought about disability comes from her book:
Having a disability has helped shaped some important parts of my identity that I value – like being open to differences of all kinds in other people (I’m often more open to others’ differences than my own), like being a fighter for social justice (any type of prejudice or discrimination infuriates me), and like having a knack for creative problem solving (you have to become creative when you can’t do things in the usual ways).
THIS. This was me. This was how I felt. The lightbulb went off. Having a disability means pride in those types of things. After happily leaving the preschool, I moved onto a job with disabled people and youth. That immersion into disability culture only took the bubbling feelings of pride and made them explode. Suddenly I was having discussions about the quirks of disability, and other people did the same. I owe a lot to my friends and peers. They helped me see that disability can be cool and inspire my advocacy/activism. These days, I find a lot of community with all the folks on Twitter for the same reasons.
If you’re disabled, and my story feels like yours, even a little, the best thing you can do, in my opinion, is get involved and immersed into disability culture. The little things that happen suddenly don’t seem so weird, you start to feel like yourself, and can begin to see disability doesn’t suck all the time. If you’re unable to be involved in an in person setting, I highly recommend Twitter or social media. I’ve learned about different diseases, disability hacks, different chats, and issues through social media. Yes, we all rant a lot about healthcare, Trump, and the like, but we also share stories, tips, and life.
I don’t want kids, youth, or even adults to feel the weight of internalizing ableism, and of feeling like disability is something to hide or hate. They don’t necessarily need to be bursting with pride, but I’d love to see more positivity or acceptance. To get there though, I believe, starts with us. If we can’t accept our disabilities, how can we expect others to?
I’d love to hear your thoughts – using #EnlightenNotInspire and have you join us on July 14th at 6pm pacific to chat!
Project Implicit
https://implicit.harvard.edu/implicit/takeatest.html
Basics on implicit bias
http://kirwaninstitute.osu.edu/research/understanding-implicit-bias/
Interview with Harilyn Rousso from 2014 by Rooted in Rights
https://www.youtube.com/watch?v=NU0LtnIaK_Q
I have a secret super power, but I’m not going to tell you what it is, you have to read the whole story to find out. You may think its obvious, I do have a special condition called proximal femoral focal efficiency (I know right!), Its to hard to say that all the time so I just say PFFD. It means one of my thigh bones, the femur, didn’t grow as big as the other one so its like I have one and half legs instead of two. Anything less then what most people have can be a pain, especially when it means you have to have several surgeries so that you can walk with an artificial leg. When you start life with something different its only different to every one else, for me, its just me. My normal is putting this thing on that looks like a leg so I can walk without crutches or a wheelchair. Just like you put on sneakers to play basketball, I put on my leg.
Most of the time I am just me and I don’t think about it, sometimes I can’t do things as well as other people and it makes me angry. My stupid brother is always faster then I am and always finds me when we play hide and seek. It takes me a little longer to find a hiding place, so there’s that. It is also really hard to be a stealth ninja with an artificial leg. I am either clumping around like a pirate or making noise with my crutches (I can’t really play hide and seek in our house with the wheelchair very well, but I’m working on it). My brother also thinks he is smarter then I am. I let him think that because he is an annoying little brother, but everyone else knows better.
When the weather is bad its hard to find fun stuff to do inside. Our house is cool with all kinds of places to hide, but its old so everything is loud . So I always lose.
Today is going to be different, remember how I told you I have a secret super power, and I am smarter then why little brother! It was rainy outside and mom and dad didn’t want to go anywhere so my bother says. “Why don’t we play hide and seek?”
I know he likes playing when its just me because he likes finding me quickly then pretending to chase me while he makes fun of me. I know it sounds sort of mean, but he is my brother and I’m sort of used to it. Anyway, back to the story.
So today was going to be different, I didn’t even try to stay quite while he counted.
“1…2…3….4….”
I went up stairs into mom and dad’s bedroom. They have one of those tall beds that they some times stick storage containers under and big walk in closet. I never hide under the bed because it a pain and hard to get back up, By the time I am on the floor and sneaking under the bed my brother is already in the room and catches me with my leg sticking out. Then he usually tries to sneak up and grab me even though I can hear him he is too fast and grabs my leg while taunting me. “too bad, so sad.”
“10…..11……12”
I am quick, today is going to be different. I know I was quicker today, but that meant I wasn’t quiet so he will have a good idea where I am hiding upstairs.
“18….19……20 Ready or not here I come.”
He is too slow today I am completely hidden, He, he, he….
I can hear him running up the stairs
“you are sooooo loud I am going to catch you the fastest ever.”
I can see the door from where I am hiding, there is no way he is going to find me.
He bursts into the room. “See I told you there is no hiding from me. I can still see you. You are the worst at this game.
How can he possible see me, hmmm….
He walks over to the bed and grabs my leg “got you”
Then he is silent for a second “wait, what?”
I am giggling so hard my whole body is shacking.
“Amy, where are you, what the heck?”
I peak between the doors to the closet and there is my, not as smart as me ,brother holding my leg up. Except, I am not attached to it. You see! My superpower (I should say one of my superpowers ) is that I can be in more then one place at a time. My parts are detachable, he, he, he…. He had no chance against my evil genius.
