Stella Young gave a widely remarked TED talk [link]1. Thereby, “inspiration” in the context of achievement and people with a disability versus non-disabled people moves into our center of attention, much with regard to objectification.
The talk itself is remarkable as it raises a few interesting issues; the discussion of these issues should not be misconstrued as criticism, but as critical review under the aspect of furthering reflection and a discussion.
While there indeed seem to be a few relevant points that Stella Young made there, I think there are aspects of this talk that need to be addressed in more detail, before one may come to one’s own reflected conclusions.
A first issue appears to be that of concluding about the achievement, or accomplishment, of a person with a disability, as such, being probably worthless so as to heighten an inspired feeling to inspiration porn. As Stella Young words it, disabled people are perceived as “objects” of inspiration. She delineates where in her view that objectification occurs, as we assume, in the sentence, where a boy says to her that “when people in wheelchairs come to school, they usually say, like, inspirational stuff”. In a way, I would assume that the mere use of grouped people – both inspired and inspiring people seem to be grouped if not stereotyped by Stella Young here – in a very short summary, as here, without furthering the discussion or extending it to concise truth searching, may not serve as an indicator for objectification. Instead, I would propose that the individual person with a disability may very well have their own, subjective experiences that may help others to learn that a lot more than otherwise assumed may be achieved by being persistent in trying to solve a problem, or to improve a particular situation, or, to go ways that so far no one or not many have gone. So I do not per se think that it is a correct general statement that, at that high school where Stella Young ran into that boy, where people in wheelchairs would give inspirational talks, that one can immediately assume to safely identify objectification in that aspect. Much rather, this general proposition that all wheelchair user talks amount to inspiration porn, in itself, seems to constitute objectification on behalf of Stella Young towards the people that did give possibly inspirational speeches in the big hall, and also of all those that gave possibly inspirational speeches there before her: most likely she did not know at all what the other people with wheelchairs/disabilities actually presented, and so she cannot know what they stood (..) for, what they represented. – Did they present about little unremarkable everyday activities that did not constitute any achievement even in their own eyes, or did they present about massive endeavors like climbing a high mountain with a particular disability that impedes such climbs, or did they present about overcoming a monumental societal or practical task? What about a recently acquired disability vice versa a disability where the person could get adjusted to it over a full lifetime? Because from my experience, the life of any person, with or without disability, may pose riddles or obstacles that then lead to adaptation or problem solving that indeed might in every single instance be considered as possibly inspirational. Overcoming what initially seem to be obstacles is the main focus of rehabilitation, and mental exhaustion and feeling really depressed are extremely close there – and so, not giving up in face of exhaustion in the context of living with a disability may be considered as inspirational.
In one paper, the definition of the task and the setting in which it was delivered, to be considered as inspiration porn, was reframed as follows:
From [1]: I am going to revisit and adjust [Stella Young’s] definition [of inspiration porn] shortly. I am also going to depart from Young’s usage of ‘disability,’ since she is referring to visible impairment, and will try to maintain the disability/impairment distinction more or less along the lines of Thomas (1999). While all of the top images returned by Young’s search phrases show people with visible impairment or signs of impairment, such as prosthetic limbs or wheelchairs, not all of these people are doing something ‘completely ordinary.’ Many of them are performing physically impressive or strenuous activities, or displaying an athletic or bodybuilder’s physique. I will therefore revise the definition in order to stress the physicality of the images:Inspiration porn is (a) an image of a person with visible signs of impairment who is (b) performing a physical activity, preferably displaying signs of physical prowess, and is (c) accompanied by a caption that directs the viewer to be inspired by the image in question.
With that, we may concede that even though some of us are indeed disabled, others seem to be visibly disabled, and so it would be safe to assume that many of us do overcome actual and real adversities that in both number and extent or size, where such feats may easily reside beyond an assumedly ordinary level from a non-disabled everyday perspective, give or take, and that in itself may be a true achievement, adding up to sums of achievements. What may make a particular achievement inspirational or not may not so much depend on the “disability” label itself, than on the individual context and also the overall context.
To know what is not inspirational, it really helps to have a rather clear image of what, then, an actual inspiration would be. Courage, persistence and ingenuity may be among the things to see or look for in inspirational feats.
Take home message 1: if you do not know exactly what it is that a particular person is presenting, what exact disability they really have, moreover if you do not even know that person, classifying their efforts as “inspiration porn” may amount to objectification itself. Before anything else, we have to accept that true inspiration does exist and that it really may be found in people that do not give up, that shine through courage, persistence or ingenuity.
A second aspect that her talk addresses is that people with disabilities may often be targeted as “inspirational” because they “overcome” and then perform little things or everyday things everyone else normally takes for granted. Differentiating between different types of disabilities and then between different people, such praise may well be in order or not at all. It may, however, not be similarly difficult for a “person with a disability” to, for example, go to the toilet all by themselves, or to perform a clean wet shave, to attend a university course or to take notes, make dinner, and so on. The ability to do any of that with ease, or with effort and difficulty, vastly differs among people with disabilities because first of all, disabilities differ generally, and they differ in the way they affect individuals, they may even differ across time for any given particular person.
We even get critics of this TED talk to assume that walking with a prosthetic leg is commonplace and a given:
From [1]: The achievements depicted in inspiration porn may be commonplace acts (e.g. walking on prosthetic legs). People with impairment are thus represented as having a smaller scope for achievement than is the case.
Oops. Leg amputees struggle with socket fit. They may often walk only with constant pain. Skin blisters or abrasions may occur and cause problems. There is a list of issues there, from socket fit over back problems to osseointegration related pains or infections that are anything but defining the act of “walking” as “commonplace act”. Of course, this may be different for each and every one.
As example, I may be able to easily perform a clean wet shave when another unilateral below elbow arm amputee for any reason may have real difficulties – so when I do it, nothing to get inspired by, but that other person might well pull of an act of inspiration. When a person with severe migraine manages to perform a clean wet shave on a particularly bad morning, that person may appear, visually, “normal” for the most part while in fact overcoming a massive adversity. When I, on the other hand (hm) perform a clean wet shave on any given day, it looks disabled because, well, hosed arm and all – but there is no particular achievement of overcoming, not from my side there isn’t. So we would have to address the tension between your visual distraction and my actual disability. On top, even what appear to be above-average achievements may not be useful to be seen as particularly inspiring or extraordinary, relative to a person, depending on specifics. Like, I always swam, played water polo as a teenager, did army service, won a high-school wide mini-triathlon among some 600 or more pupils, we were a team of four to win the 100 km march and the end of our officer training’s “survival week” that took place in part during a hurricane with up to 120 km/h wind speed and horizontal cold rain, taking us some 18 h to complete, and so without much surprise but with a lot of training still, I swam good results even in international competitions, also after the disability had occurred – nothing groundbreaking new there at all. Hard work and focused dedication, sure. But nothing past a certain amount of grind and elbow grease to get inspired by, as such. Much rather, the way I tied my swim trunk cord, given a certain inconvenience, or the way I fixed my wrist watch arm band after the swims, that certainly should have inspired many – but the truly inspirational potential here was definitely overlooked by all, for sure.
Take home message 2: if you do not know a particular person’s gifts, abilities, and challenges, you cannot possibly say whether any feat, activity, task or achievement is extraordinary or so la-la. You quite simply do not know. A measly little task may indeed show inspirational potential when delivered by one person, whereas a world class sports event win may be something another person just had coming.
Thirdly, Stella Young presupposes that it is wrong to regard disability as a Bad Thing (BT). And she says it is normal and not exceptional to live with a disability. This from my view feels really wrong. As a matter of fact, physical disability such as limb amputation, as a good example, seems to be directly associated with an increased suicide rate and increased depression rate [2]2 3 and while overall, depression may affect 1-3% in general population, around 15% to over 90% of amputee study subjects were found to have it. It may clearly not be regarded as a world-class performance, to live with a particular disability – but to suggest that it is entirely normal, to do so, and to have a Stella Young waltz in and smear our little everyday achievements as something that is not special, that denies the many people that deeply suffer and still pull it through. The overall predicament of physical disability therefore might be a reason to cause concern, without more specifics – and a life with disability lived is not usually an easy feat.
Take home message 3: as much as some people with disabilities want to put it, a disability is just, if not first and foremost, that – an aspect where one is at a clear disadvantage. Hence the term disability. The term itself gives it away. Disabilities normally and factually are associated with considerable suffering, generally, indicated also by higher rates of depressions and suicides. So to say that disabled people generally lead normal lives risks to be plain wrong – they just may, and they just may not.
Fourth point, the life one leads with a disability may require actual practical, financial or other dedicated support from others. Also, these others should not be objectified, packed into a nameless mass. They equally deserve to be named, their motives or hopes could be mentioned or discussed, and their efforts often are relevant each and every time, even if they are not world-class. There is no god-given right for the endless support. So Stella Young says “I had a very normal, low-key kind of upbringing.”. Did she now, really. Nowhere on the web do we get any interviews with her parents, siblings, or friends [link]. As it appears she may have had considerable extra support, so her upbringing was more work than she herself seems to reflect. At any rate, I get support for my prosthetic arm, as I could never have pulled that one off all by myself. For me to say that the path I walked since the amputation, particularly with regard to getting the prosthetic arm situation all fixed and in order, would be very normal or low-key, that would not be correct. We made quite a splash I would say, and I was not alone in that. To say I did it all by myself, and that all things that happened there were totally normal, that would really be skewed. Stella Young reportedly had Osteogenesis imperfecta, which is known to negatively affect parents and caregivers4. Along the same lines, parents and caregivers of individuals with cerebral palsy appear to have rates of depression clearly in excess of a general population 5 6. Stella Young has not acknowledged that in her speeches, and it remains an open wound in any discourse that wishes to “reframe” disability: at the end of the day, if caregivers or parents give up the individual with chronic impairment, the fun may be gone at first, ever so comprehensively.
Take home message 4: do not believe that others share a particular disabled person’s possibly skewed view of what constitutes or does not constitute support. If it takes time, effort, or money that was invested for your support, then likely it is, in fact, support that a person received. And if it was extra time, effort or money, it may have well been extra support. That should be acknowledged, it is very important, also and in particular to those, that deliver the support.
Fifth point – even when there are no apparent or visible outstanding efforts of a person with disability that delivers some activity or feat, completes a task or participates in some race, the “overcoming” or “inspirational step” that then may be awarded or applauded may not reside so much in a mechanical difficulty that is managed well, but in the fact that society itself tends to view physical disability as an inferior state and a personal misfortune – and leave things there. If this perception is questioned, one could cite numerous works that show this to be true, and often times with good reason.
As example, with a below elbow amputation, I was not once given a technical opportunity, offered a solution, shown a method, to mechanically modify a road bike lever setup where I could use the integrated brake/shift levers of a Shimano Ultegra brake and shifter system with just one hand – even though I had asked a number of bicycle mechanics, including one that worked for the national paralympic bike team. So I “overcame” this by figuring out the bike modification myself. While one could argue that these mechanics did not have a blueprint or handbook to look up this particular modification, I would suppose that the prevailing idea was that I had had a personal misfortune and that this was where things had to stay. So no one questioned the apparent impossibility of doing exactly that.
Here, Stella Young apparently stated that “I grew up in a very small country town in Victoria. I had a very normal, low-key kind of upbringing. I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal. (…) And they were right, you know. I went to school, I got good marks, I had a very low-key after school job in my mum’s hairdressing salon (…) I wasn’t doing anything that was out of the ordinary at all.” If that is right, then she was very well shielded from the real world. Then, why does she seem to be oblivious to her family’s support efforts possibly in combination with whatever privileges otherwise were present (privileges may also pertain to education status, as well as income)?
As another example, just because I find it easy to build something in 3D, that does not mean that technology is totally “accessible” – there are massive hurdles pertaining to hardware availability and software use training. So many times, the societal barrier that “inferiority” or “permanent misfortune” pose is the one that is the obstacle. And overcoming such an obstacle may be hard for anyone of us, and in fact for many people, not so much because of technical issues, but because societal mechanisms and technical solutions may tend to go hand in hand. Stella Young then, in my opinion, correctly points out that “I really think that this lie that we’ve been sold about disability is the greatest injustice. It makes life hard for us. And that quote, “The only disability in life is a bad attitude,” the reason that that’s bullshit is because it’s just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. (Laughter) (Applause) Smiling at a television screen isn’t going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It’s just not going to happen.”
The direct and painfully logical consequence of that is that someone has to do something, and not just anything, but something specific about exactly that. Without someone doing something specific, nothing will happen – like, at all.
Even calling people that do not lay open their own fears that feel “inspired” could be the next provider of specific support.
Admitted, almost all of them probably never will be – but that would be a different talk. For time being, disability often requires sufficient external support that this warrants specific acknowledgment. Conversely, not everyone that talks into a microphone is automatically a role model for gratitude.
Take home message 5: if the overcoming consists more in overcoming a societal misconception rather than in providing impressive technicalities or impressive mechanics or displacements or overcoming a physical obstacle or impediment, it still may be remarkable, also from an external standpoint. To achieve that, for example, a girl with osteogenesis imperfecta may perceive her upbringing as entirely unremarkable and normal, but from an external view and even her closer family that provided such a perception, seems to be a remarkable feat in itself, and worthy to be considered for the attribute ‘inspirational’. Possibly she may have had to thank her environment, financial sources as well as parents and siblings for exactly that, but does not opt for that, for any reason.
Sixth – other critical reviews about alleged inspiration porn instances miss these elementary aspects so they cannot satisfy these:
– other critical reviews also appear to overlook the fact that disability is objectively negative, at least statistically,
– other critical reviews appear to overlook the consequential aspect of this, in that each and every disability in some way or another will require an extra mile, and disabilities as well as individual aspects also tend to be individually different; with that, extra mile means just that, it never falls from the blue sky;
– other critical reviews also seem to overlook the fact that per individuum, even what appear to be small achievements may have a huge significance, whereas they equally miss that in any other given instances, objectively superb feats of a person may not be inspirational given a specific biography;
Take home message 6: specific issues with naming everything inspiration porn have not been listed so far, in that disability is objectively negative, depression (to name something serious) seems to be more prevalent in the physically disabled community, and so even just sustaining a cheerful mood with a disability is always to be regarded as an achievement.
Point seven: many, if not most, statistically and financially relevant disabilities, or aspects of a disability, may be invisible. According to some views of the subject, disability means to not be able to function, to do certain things. This is not to be confused with disfigurement where one may not exactly look the part but still get by rather well.
Cited from [1]: Because of its focus on visible impairment and physical prowess, inspiration porn represents disability as a problem located in individual bodies, to be overcome through individual efforts. By constructing disability as an objectively available, visually distinct, individual impairment, inspiration porn obscures structural and systemic causes of disability.
This point of critique seems worded in an interesting way. I would agree to a part, but then, I would try to distinguish visual clues that suggest an apparent visibly discernible impairment or disability (“disfigurement”), from functional and actually operational relevant impairment (“disability”). At the end of doing that properly, you may agree (see above) that mental suffering as consequence of the impairment on one hand and the disfigurement on another hand is the actual issue. While you cannot directly see that, that is the crux of the thing.
When I filled in a number of questionnaires about restrictions in activities of daily living (ADL) myself, I would say that I was able to perform most of these ADL, and, most of them, rather effortlessly. Sure, once the less common activities are touched like playing guitar with all ten fingers and so on, we could hit rock bottom with me here – but as far as the activities that most people agree to be typical ADL are concerned, I may not even need a prosthetic arm and still be totally OK. So I would not classify as visibly disabled as much as I would classify as “apparently visibly disabled” (really not the same thing) and “disfigured” or at least deviating from an average look to a degree where people would infer assumed functional restrictions that amount to disability.
On top, individual restrictions always happen within the world of that individuum – so when I can do all that I want to do, I may not realize that I could be restricted with regard to other activities – when another person may feel totally restricted, regardless of objective aspects there.
So by just looking at me, you will probably think that I am functionally disabled (but an uncle of mine, that is one of the great gesture and communications researchers, told me, that sitting in my car with me driving he would never have figured I was doing that with just one hand and an arm stump), and you would think that first thing I would need a prosthetic hand to cover all that up really well. And that is just you thinking – has nothing to do with me.
At the same time, a person with migraine may be suffering so much more, and you could stare at that person all day long and not be wiser.
So, society along with Stella Young appear to be obsessed with the visual image, as if visuals were the way to assess anything, disability in particular. But that is not how things work. People like me, with a disabled amputated arm, may get a prosthetic arm paid. Another person that suffers from an invisible disability may never see a dollar in insurance support. All that may be because there seems to be a disability-related effect just like the CSI-effect: just because you think something went or is the one or another way, you also think there necessarily needs to be photo or video footage or DNA or whatever other visual correlate. And because our reptile brains may tell us that correlation equates causation, seeing an amputee perform anything risks to be immediately equated to a miracle – when in fact it is not society that is at fault, but your own misconception with regard to your ability to “see” a disability (all you see are visuals), to “understand” a disability (all you do is infer from your view), and your own misconception to “do” something about it – whatever it is you then do.
After all, while I have a very visual appearance of disability, the unwarranted attention to visual distraction in part helps me, e.g., get a prosthetic arm and such, with maybe less hassle, so why would I object.
Conversely, the fight for true disability recognition goes on, without the visual aspect riddle being solved at all. One thing I suffer most from, all things being relative, is phantom pain. You could stare at my arm stump for weeks and would have no idea.
Take home message 7: seeing is not necessarily knowing, as far as apparently visibly disabled people are concerned.
The aspect number eight is that an inspiration is then observed when other people are, in fact, inspired and let their actions show that. This is clearly the case when I would train sports with non-disabled peers, and while they may be relaxed at first, after a while they want to win against me, like, at all cost. Then, my efforts to be fast translates as inspiration for them to be fast – and whether the true underlying motive is competitiveness, envy or real inspiration is uninteresting to disambiguate, the clear response of the others is to exert themselves more vice versa my disabled body.
Along these lines, as example, Dick and Rick Hoyt actually caused many sports groups to form and emerge, to motivate many other people with disabled colleagues, friends or relatives to take up similar sports, and they also were reported to motivate all sorts of other athletes to train and compete. So clearly, there seems no adequacy in using the inspiration “porn” attribute, particularly in the face of true and earned inspiration that translates as many others doing similar things after and because of that.
Take home message 8: whether an act or expression is in fact inspirational, can be seen not so much by investigating the presented alleged act or feat that apparently is inspirational, but, by observing the other people, the ones that say it was inspirational, over time.
And aspect 9 is that not all you portray as feat or achievement is something you – or anyone else – really wants. Take the overcoming of disability by performing outstanding sports achievement with Paralympic medal wins.
This is nicely argued here:
Cited from [1]: For Paralympic athletes as well as ordinary people, the crucial desirable-but-undesired element is willpower (Barrett 2014, 1577) – which suggests that the inspirational achievements of some people not only reflect positively on the person responsible for the achievement, but reflect negatively on those who resemble that person but fail to achieve the same (Hutcheon and Lashewicz 2014; Purdue and Howe 2012).
Training for such sports is an immense if not insane time commitment. If that is what one does, there is almost no other content in one’s life. There only is obsession, and for good reason. Everyone else at that level is obsessed, too. That is what it takes. Then, it takes a clear commitment to the material for such training. One goes through stinky sneakers, ripped swim wear, bicycle parts and bicycles, and whatever else. The amount of commodities turned consumables may be surprisingly high. Then there is food, nutrition, and staying healthy – because as is, world class competitive sports level training may turn out to be abusive to a normal body. The mental requirements to survive such daily training over years and years are likewise relevant – a bit of willpower may not be enough, you need a lot of that. A bit of competitive edge may get you to the next club competes, but not to national, leave alone world class competitions: for that you need to embody a different type of beast. And if you fail, if you do not reach the laurels, the top of the ladder, the proverbial gold medal, you wasted a lot of effort, time, money, other chances, maybe even health, and life, and as stated above, may be viewed with derision and other negative views. People may look at sports events and see a visual output combined with what is then named “success”, and consider it as inspirational but only think of some aspects – but not all, and not in a realistic way.
Take home message 9: if you see what visibly appears to you as a disabled person accomplish some world class performance, then consider that the true inspiration there may come from a type of drive and motivation that you may not understand, so really, consider this as effect of possibly fictional or only poorly understood quality.
So.
Criticizing positive comments and highlights of a non-disabled societal mainstream as “inspiration porn” itself seems to focus only on the visual and apparently apparent and may constitute and act of fictionalizing it itself. Clearly, there seem to be missing motives and aspects. Where do structures help to do away with an act of overcoming? Who develops, builds and pays for these structures? How do we align the requirements for a laudable feat to be classified as extraordinary with the individual variation so everyone gets it at once? And how are invisible disabilities understood, visualized so to speak, made apparent so everyone gets that at once? How are disfigurements or “apparent visibly apparent disabilities” and actual impairments, functional disabilities, true restrictions, discerned in a better way so that everyone gets it at once? How does mental and physical suffering relate to disfigurement and disability? Why do people with invisible impairments have it hard? Why is it, on the other hand, very hard to fake an arm amputation? Why do we think we have to understand that all rationally?
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title={The problem with inspiration porn: A tentative definition and a provisional critique},
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journal={Disability \& Society},
volume={31},
number={6},
pages={838--849},
year={2016},
url="https://www.tandfonline.com/doi/pdf/10.1080/09687599.2016.1205473",
publisher={Taylor \& Francis}
}[Bibtex]
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Footnotes
- Stella Young – TEDxSydney – “I’m not your inspiration, thank you very much”- June 2014 – Transcript [link] (C) Copyright Stella Young and TED
I grew up in a very small country town in Victoria. I had a very normal, low-key kind of upbringing. I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal. And when I was 15, a member of my local community approached my parents and wanted to nominate me for a community achievement award. And my parents said, “Hm, that’s really nice, but there’s kind of one glaring problem with that. She hasn’t actually achieved anything.” (Laughter)
And they were right, you know. I went to school, I got good marks, I had a very low-key after school job in my mum’s hairdressing salon, and I spent a lot of time watching “Buffy the Vampire Slayer” and “Dawson’s Creek.” Yeah, I know. What a contradiction. But they were right, you know. I wasn’t doing anything that was out of the ordinary at all. I wasn’t doing anything that could be considered an achievement if you took disability out of the equation. Years later, I was on my second teaching round in a Melbourne high school, and I was about 20 minutes into a year 11 legal studies class when this boy put up his hand and said, “Hey miss, when are you going to start doing your speech?” And I said, “What speech?” You know, I’d been talking them about defamation law for a good 20 minutes. And he said, “You know, like, your motivational speaking. You know, when people in wheelchairs come to school, they usually say, like, inspirational stuff?” (Laughter) “It’s usually in the big hall.”
And that’s when it dawned on me: This kid had only ever experienced disabled people as objects of inspiration. We are not, to this kid — and it’s not his fault, I mean, that’s true for many of us. For lots of us, disabled people are not our teachers or our doctors or our manicurists. We’re not real people. We are there to inspire. And in fact, I am sitting on this stage looking like I do in this wheelchair, and you are probably kind of expecting me to inspire you. Right? (Laughter) Yeah.
Well, ladies and gentlemen, I’m afraid I’m going to disappoint you dramatically. I am not here to inspire you. I am here to tell you that we have been lied to about disability. Yeah, we’ve been sold the lie that disability is a Bad Thing, capital B, capital T. It’s a bad thing, and to live with a disability makes you exceptional. It’s not a bad thing, and it doesn’t make you exceptional.
And in the past few years, we’ve been able to propagate this lie even further via social media. You may have seen images like this one: “The only disability in life is a bad attitude.” Or this one: “Your excuse is invalid.” Indeed. Or this one: “Before you quit, try!” These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we’re objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, “Well, however bad my life is, it could be worse. I could be that person.”
But what if you are that person? I’ve lost count of the number of times that I’ve been approached by strangers wanting to tell me that they think I’m brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. (Laughter) And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren’t so bad for you, to put your worries into perspective.
And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we’re overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term “disabled people” quite deliberately, because I subscribe to what’s called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses.
So I have lived in this body a long time. I’m quite fond of it. It does the things that I need it to do, and I’ve learned to use it to the best of its capacity just as you have, and that’s the thing about those kids in those pictures as well. They’re not doing anything out of the ordinary. They are just using their bodies to the best of their capacity. So is it really fair to objectify them in the way that we do, to share those images? People, when they say, “You’re an inspiration,” they mean it as a compliment. And I know why it happens. It’s because of the lie, it’s because we’ve been sold this lie that disability makes you exceptional. And it honestly doesn’t.
And I know what you’re thinking. You know, I’m up here bagging out inspiration, and you’re thinking, “Jeez, Stella, aren’t you inspired sometimes by some things?” And the thing is, I am. I learn from other disabled people all the time. I’m learning not that I am luckier than them, though. I am learning that it’s a genius idea to use a pair of barbecue tongs to pick up things that you dropped. (Laughter) I’m learning that nifty trick where you can charge your mobile phone battery from your chair battery. Genius. We are learning from each others’ strength and endurance, not against our bodies and our diagnoses, but against a world that exceptionalizes and objectifies us.
I really think that this lie that we’ve been sold about disability is the greatest injustice. It makes life hard for us. And that quote, “The only disability in life is a bad attitude,” the reason that that’s bullshit is because it’s just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. (Laughter) (Applause) Smiling at a television screen isn’t going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It’s just not going to happen.
I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user.
Disability doesn’t make you exceptional but questioning what you think you know about it does.
Thank you.
- Cited from reference[2]: To examine the estimated prevalence and correlates of suicidal ideation (SI) among individuals 1 year after a first lower extremity amputation (LEA). (…) At 12 months postamputation, 11 subjects (15.71%) reported SI; of these, 3 (27.3%) screened negative for depression. Lower mobility, lower satisfaction with mobility, greater impairment in ADL, lower satisfaction with ADL, lower self-efficacy, and depressive symptoms were all correlated with the presence of SI at a univariate level; of these, only depressive symptoms remained significantly associated with SI in a multivariable model. (…) However, our SI estimates are consistent with those previously observed in individuals with diabetes (15%),71 and are higher than reported prevalence rates in community-dwelling elderly men (1%)72 and 1-year prevalence rates from a U.S. National Comorbidity Survey (3.3%).73 This suggests that the present rates may be specific to individuals with amputations as a result of dysvascular disease, particularly associated with DM. (..) Several factors were identified in the present study that may impact the development of SI in individuals with LEA. Consistent with previous research in both medical and psychiatric samples, higher levels of depressive symptoms were correlated with SI at 12 months after amputation. Functional abilities, including both mobility and ADL, were correlated with SI. Individuals who reported more difficulties with ambulation and with ADL were more likely to report SI 1 year postamputation.
- Cited from reference [3]: Most patients undergoing limb amputations suffer significant emotional changes. The aim of this study was to estimate the prevalence of suicide attempts and depression in a sample of Mexican patients with limb amputations and,second, to determine whether the patients’ functionality correlates with the presence of depression. We studied 40patients who had undergone a limb amputation. The suicide attempt was evaluated using the Suicide Intent Scale. The depression was assessed using the Hamilton Depression Rating Scale, whereas the functionality of the patients was measured using the Functional Independence Measure. In this sample, 90% were men, whereas only 10% were women. In terms of the suicide behavior, we identified suicide attempts in 27.5% of the patients. The rate of depression was 92.5%. In the Functional Independence Measure, we observed that 57.5% of the patients showed complete dependence. Finally, a significant correlation was found between depression and functionality (r=−0.75,P<0.001). The findings of the present study highlight the high incidence of suicide attempts and depression in Mexican patients with limb amputations. Also, we identified a correlation between the lack of functional independence and depression. Therefore, holistic interventions are necessary in these patients: rehabilitation therapy to increase their functionality, and psychological and pharmacology therapy to decrease suicidal behavior and depression. Finally, more studies using larger samples are necessary to obtain conclusive results.
- Cited from [4]: Lazow, M. A., Jaser, S. S., Cobry, E. C., Garganta, M. D., & Simmons, J. H. (2019). Stress, depression, and quality of life among caregivers of children with osteogenesis imperfecta. Journal of Pediatric Health Care, 33(4), 437-445. — The purpose of this study was to evaluate stress, depressive symptoms, and quality of life (QOL) among caregivers of children with osteogenesis imperfecta (OI) and to determine if associations exist with patient disease-related characteristics. – Methods: Psychosocial outcomes were evaluated in 33 caregivers of 31 patients with OI using the Pediatric Inventory for Parents (assessing stress), PedsQL Family Impact Module (assessing QOL), and Center for Epidemiologic Studies Depression Scale (assessing depressive symptoms). – Results: Higher levels of patient pain and lower patient physical functioning were significantly associated with both higher caregiver stress and poorer QOL (p < .05). Center for Epidemiologic Studies Depression Scale scores were not associated with patient pain or physical functioning. – Discussion: Parents caring for children with OI with higher levels of pain and/or lower physical functioning are at higher risk of suffering from increased stress and poorer QOL. Interventions should be developed to screen for and target these at-risk caregiver groups with resources and support.
- Cited from [5]: Time burden of caring and depression among parents of individuals with cerebral palsy, by Eun-Young Park & Su-Jung Nam – Download citation https://doi.org/10.1080/09638288.2018.1432705 – Abstract – Purpose: The presence of an individual with disability in a family affects the whole family. Families of individuals with cerebral palsy (CP) experience increased psychological anxiety and financial problems; specifically, parents tend to feel time pressure and struggle to maintain their social and cultural activities. Methods: t-Tests and ANOVA with post hoc Tukey tests were used to compare caregiving time, time pressure, and depression between parents. Multivariate logistic regression analysis was used to examine the effect of caregiving time and time pressure on depression in parents. Results: Regarding depression, 58 (38.2%) respondents scored ≥16 on the Center for Epidemiological Studies – Depression scale. Respondents supporting a preschool child spent more time than those supporting adults did; those supporting adults reported less time pressure than those supporting individuals of other ages. Caregiving time’s effect on depression was not supported, whereas increased time pressure raised the risk of depression. Conclusions: The frequency of depression among parents supporting individuals with CP exceeded preceding findings. Time pressure due to support appears to directly predict depression. Total time spent caring appears unrelated to depression. Implications for Rehabilitation: It is necessary to prepare various community and family support systems in order to relieve parental caregivers’ burden and exhaustion. Interventions should focus on parents with higher time pressure than parents with high caregiving time. Physical and psychological difficulties experienced by parents supporting a child with a disability vary with the child’s life stage, meaning that families’ care burden partly depends on the age of the individual with disabilities.
- From reference [6]: The psychosocial well-being of parents of children with cerebral palsy: a comparison study – by Anna Cheshire, Julie H. Barlow & Lesley A. Powell – Download citation https://doi.org/10.3109/09638281003649920 – Abstract – Purpose. Parents of children with cerebral palsy (CP) may be at risk from poor psychosocial well-being, compared with parents of children without a long-term health condition (LTHC). However, research has produced some conflicting findings on the topic and no comparison studies have been conducted in the UK. Furthermore, studies have only used measures of negative psychosocial well-being. The aim of this study was to conduct a comparative study of parents of children with CP and parents of children without a LTHC in the UK. Method. Seventy parents of children with CP and 70 parents of children without a LTHC completed self-administered questionnaires, comprising measures of psychosocial distress and positive psychosocial well-being. Results. This study demonstrated that parents of children with CP have significantly poorer psychosocial well-being compared with parents of children without a LTHC: parents of children with CP had lower satisfaction with life and higher levels of anxious and depressed mood. Conclusions. These results suggest caring for a child with CP may put parents at risk from poor psychosocial well-being. Interventions to improve parental well-being are urgently needed.
