Not “Disabled Enough”: Nathalie Allport-Grantham Goes to Stansted Airport

This happened just after New Year’s, and I’m just hearing about it now. Happy New Year to Nathalie Allport-Grantham, who experienced a particularly annoying variation of discrimination  due to  not looking “disabled enough” to the staff at the Stansted airport in the UK.

Image on "Airport" written in lights in block letters on a black background. Keyword: Allport-Grantham

Image Description: “Airport” in block letters, in lights, against a black background.

Content Note: Ableism, not “disabled enough”, discrimination by airlines, non-apology

“But You Don’t Look Sick”

For those of you who haven’t read thoughts on this before (by me or by other writers in the disability community, because not looking “disabled enough” is unfortunately a common experience among disabled people), here’s the breakdown:  There’s this perception out there, held mostly by non-disabled people, that if someone doesn’t have some sort of sign of a physical disability (like, they’re using a mobility aid or there’s some bodily sign of disability), they’re not really disabled. It’s outright wrong, and offensive enough on its own, but people tend to rub salt in the wound by asking for (sometimes demanding), when they’ve no authority to do so, proof of disability if there’s some sort of disability accommodation involved.

Like when Kanye West sent his staff into the audience to check that audience members that weren’t standing during his concert when he demanded they do so actually couldn’t stand.

(No disability accommodation involved there; Kanye just wanted everyone to stand while he was singing.)

Underlying this desire to “check” is an assumption that a person who says they’re disabled but doesn’t look “disabled enough” is lying; it leads to behaviour like people leaving notes that say “FAKER” by disabled parking passes. There are a lot of people out there who like to act as self-appointed assessors of degree of disability and policers of “fakers”. Some of them take it upon themselves to accordingly mete out justice.

It’s not the public’s role to do any of that. When a non-disabled person on the street assumes that they have the power and the right to assess disability and its degree, and therefore eligibility or ineligibility for a support (and to demand “proof” if a person doesn’t seem disabled to them) is indicative of deep and insidious ableism. The non-disabled person’s belief that they have power over disabled people is clearly on display.

Nathalie Allport-Grantham, who has Ehlers-Danlos Syndrome, Marfan Syndrome, and Postural Orthostatic Tachycardia Syndrome and uses a wheelchair part-time, experienced an extreme example of this in Stansted Airport in the UK.

It was truly unacceptable – yet another sign of how the airline industry in general needs to get its act together when it comes to service for its disabled customers.

Nathalie Allport-Grantham and Stansted Airport

Nathalie Allport-Grantham uses a wheelchair part-time, but opted not to bring one on her trip out of Stansted Airport, as she was told that the airport could provide one. This service proved less than reliable, but the real trouble started when she and her boyfriend tried to check in at the gate for their flight with Ryanair. She was not in the wheelchair at the time; she’d had to walk to the gate from a nearby lounge, because the staff in the lounge that had taken the airport wheelchair and promised to bring it back and didn’t.)

As Allport-Grantham told The Independent, the woman at the gate decided that she didn’t need help.

“…I told the lady on duty that I had booked special assistance and needed help with my bags and to get on the aircraft.

“She looked at me and said, ‘If you want someone to carry your bags, you’ll have to pay £50.’

“I told her I had pre-booked disability assistance and I need help getting onto the aircraft.

“She said, ‘I’m actually waiting for someone who cannot walk, if you want to get on the plane I suggest you queue up like everyone else. If you don’t want to carry your bag, it’s £50 to have it put in the hold.’

“The person she was waiting for was me, but she expected someone who looked more ‘disabled’ than I do.

“Then she said loudly, in earshot of everyone at the gate: ‘I’ve got disabled people to help and you are wasting my time.’ Everyone was staring. It was humiliating.”

Now, you can argue that the woman at the gate was just doing her job as instructed – she’d presumably been told to look for a person who was much less physically mobile. However, there are a couple of issues with this.

Nathalie Allport-Grantham, Assumptions, and Accommodations Denied

The woman at the  may just have been doing her job, yes. But her perception that just because Allport-Grantham was more mobile than she’d either been explicitly told or that she’d assumed based on given information led her to deny the young woman accommodations to which she was entitled. As I touched on earlier, her behaviour isn’t surprising, given what else Allport-Grantham experienced at the hands of “disability services” at Stansted Airport that day:

  • No lifts available; she was told that staff would have to help her up the stairs into the plane.
  • After checking in at the airport, her boyfriend wheeled her to a lounge in a wheelchair that the airport provided. She transferred into a more comfortable seat, and a staff member took the wheelchair, promising to return it. He never did. It was from here that she had to walk to the gate, five minutes away.
  • She sat on the runway by the plane in an airport wheelchair for ten minutes in the rain before she could get assistance to get on the plane.

But that’s not really the point.

Obviously there are problems with disability services in general that need addressing, but the woman’s behaviour at the gate is especially problematic, as it’s indicative of the deep ableism I talked about earlier. I used a wheelchair on and off for a year after I got out of stroke rehabilitation. Mostly I could get around with my cane, but walking for long distances was very tiring, and it was nice to have the option, on days when my fatigue level was high (or when I wanted to keep it from getting too high too quickly) to be able to use my chair. People with many types of disabilities make use of a wheelchair for exactly the same reasons – you might never see them use a mobility aid, but that doesn’t mean that they don’t use one.

It must have been so frustrating to be in Allport-Grantham’s situation, to have to stay polite after explaining twice that she’d pre-arranged for help to be available, when the person she was talking to  had obviously decided was she wasn’t “disabled enough”  to receive support (even though that’s not her right.)  It must have been so difficult to fight anyway despite the fatigue caused by having to walk to the gate from the lounge on top of the stress of having a plane to catch, and the general stress of travel…,

And to have the woman at the refuse to even investigate whether Allport-Grantham was even right, so sure that she was dealing with a “faker” that she didn’t even ask for her name, so that she could see if Allport-Grantham was actually who she claimed to be…it must have been infuriating, especially in light of the fact that this exact action eventually settled the matter: another staff member stepped in, noticing Allport-Grantham’s tears, checked her name against a list of people who had requested disability services, and verified that she was indeed the person they were waiting for.

Such a simple way to deal with the issue, but so much more effective than saying to a passenger (my paraphrase), “Step aside, faker. You’re wasting my time.” But the woman at the gate’s assumption that Natalie Allport-Grantham was faking a disability so coloured her attitude toward her that she couldn’t be bothered to do even the barest minimum to check a customer’s story.

You’re welcome to argue with me over whether this is ableism, but you can’t deny that it’s horrible customer service.

Meet Me at Camera Three, Stansted Airport

I’ve worked a lot of difference customer service jobs – grocery cashier, ice cream scooper, snack bar attendant in a movie theatre, a brief stint as a cashier in drug store right before my stroke, customer service manager for a website company, customer service for a government agency…

The best advice that I got was when I worked in the grocery store, when my boss once told me that the money that the customers spent in the store was money that went into paying my wages, so it literally paid to keep them happy.

I’m proud of the customer service skills that I’ve developed – and if I was a businessperson who had someone on my staff who:

  • Took a wheelchair that the company provided to a customer, promised to return it, and then didn’t
  • Left a customer sitting in their wheelchair in the rain for ten minutes while luggage was loaded onto the plane
  • Told a customer, any customer, that they were wasting our time,

…there’d have to be a damn good reason for it.

Every time I hear of a story like this, I think not only of the effect on the disabled person involved, but of how short-sighted the business is being.

(Sidebar: It’s hard to know in this case who’s ultimately the most short-sighted, because several organizations are involved: Ryanair presumably employs the woman at the gate, “wheelchair services” within Stansted Airport are provided by a company called Omniserv, which Stansted Airport books with the airlines and the airlines pay for. But Stansted is still responsible for how the services are carried out.)

I don’t quite get it, but given these things, and given the fact that Ryanair’s position on all this was to push it on you, and your position was to push it on Omniserv

If I was still using my wheelchair, instead of driving a little out of my way to fly out of Stansted Airport because of your excellent services for disabled people, I’d rather drive a lot out my way to fly out of an airport where:

  • Omniserv didn’t handle wheelchairs
  • I could get to my destination without having to fly Ryanair
  • Staff have disability sensitivity training (this may not exist; there sure doesn’t seem to be a lot of evidence for it.)

Bottom line? You wouldn’t get my business. Businesses that make disabled people feel subhuman don’t get my money, and other disabled people get told why. I usually just buy a snack and a magazine in the airport while I’m waiting for a flight, but I guarantee that lots of disabled passengers spend a lot more than that.

Do you want our business or not?

By now, hopefully someone involved in this Stansted Airport clusterfuck has issued Nathalie Allport-Grantham a real apology, instead of the “pass the buck” non-apology she was offered earlier in the month.

If not, someone needs to get on it – this isn’t that difficult.

Ableism in Britain’s NHS – Ian Shaw Put in Palliative Care with a Treatable Cancer

Ian Shaw, a 35-year-old disabled British male, is recovering nicely from testicular cancer. He’s fortunate; if Dr. Justin Wilson hadn’t stepped into his case, ableism within Britain’s National Health System might have prevented Shaw from getting chemotherapy.

"Ableism" written in white block letters on a brick wall. Keyword: Ian Shaw

Image Description: “Ableism” written in white block letters on a brick wall.

Content Note: Ableism, cancer, child death, euthanasia, medical model of disability, organ donation, parent killing child with disability

***

Ian Shaw is autistic, intellectually disabled, and doesn’t communicate using words. He has epilepsy. He’s spent most of the last decade in secure units because he has behaviours that are difficult to manage, but his parents fought to get him moved into a community residential setting, and eventually got him a placement.

A few months after moving, he was diagnosed with advanced testicular cancer. Shaw’s family blame the staff at his previous placement that the cancer was not detected sooner – he’d apparently had a testicular swelling treated the year before, but no follow-up had been done.

Ian Shaw received his cancer diagnosis in December 2016. By February 2017, the tumor had grown so large that it was affecting Shaw’s spine, making him unable to walk. Doctors at Luton and Dunstable hospital said that, given the rapid downturn in his condition, they wouldn’t be able to start the planned chemotherapy treatments, and declared his condition terminal. Shaw went to live with his family and receive palliative care in their home.

Enter Dr. Wilson, a psychiatrist who has studied cancer treatment in intellectually disabled people.

Ableism in Ian Shaw’s Treatment

Knowing that testicular cancer is very treatable with a high rate of success, the story puzzled  Wilson.  Statistics support his position:

“For men with cancer that has spread to the lymph nodes in the back of the abdomen, called the retroperitoneal lymph nodes, the survival rate is about 96%. But, this depends on the size of the lymph nodes with cancer. For men with cancer that has spread outside the testicles to areas beyond the retroperitoneal lymph nodes, the survival rate is 73%. About 11% of testicular cancer is diagnosed at this stage.”

Given that Ian Shaw’s tumor was affecting his spine, even if we assume that the survival rate was even 60%, why the assumption that there was no point in trying a course of chemotherapy for a cancer that statistics show does respond readily to it?

Dr. Wilson’s theory was that there was some ableism involved, as he told the BBC:

“My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread,”

He was also concerned that the challenges of administering chemotherapy to someone with Ian Shaw’s behavioural challenges were making the hospital reluctant to offer treatment. He requested to be put in touch in with the family, who got a second opinion about treatment for Shaw after talking with him.

The University Hospital Trust for Luton and Dunstable Hospital said that Ian Shaw’s disabilities weren’t a factor in the decision to put him on palliative care, but the proof seems to be in the pudding on this one:

  • Shaw is receiving chemotherapy at the Royal Marsden Hospital – he is put under anesthetic while it happens. Not a perfect solution, but it allows it to happen
  • The tumor is shrinking  – Shaw now uses a wheelchair
  • A young man who had been told he was going to die within months has hope

If Ian Shaw was indeed refused treatment initially because of his disabilities, it was because of this medical model of disabilities that tries to tell us that “quality of life”,”quality of contribution to family/community/country”, and “quality of relationships” need to fall within narrowly-defined, highly subjective parameters in order to be “valid”. It’s a way of looking at people, community, relationships, and the world that it seems like we should have grown out of by now, quite frankly.

The Importance of Confronting Ableism

It’s not just Britain. We know that disability affects whether or not someone gets an organ donated to them in America, and whether people are granted permanent residency in Canada. We know that it was also in Britain where the courts gave a hospital permission to kill Nancy Fitzmaurice, who didn’t have a terminal illness and who was breathing on her own with no life support; she was twelve years old.

Any person could become disabled at any time. It’s important for all disabled people to know that these ableist attitudes exist within our systems, so that they can be prepared to fight them if they have to, especially  when they’re dealing with agents of systems (medical system, legal system, judicial system, etc.)

Ableism kills. We must never become complacent.

Read More about Ian Shaw’s Story

Utilitarian Thinking and Ableism

Two profoundly ableist articles had the disability community buzzing last week. Because of their subject matter, scope, and implications, it feels like many more articles were released, but it really is only two.

Content Note: Discrimination, Infanticide, Rape, Rape Culture, Systemic Ableism

"Ableism" written in white block letters on a brick wall. Key word: Peter Singer

Image Description: “Ableism” in white, block letters across a brick wall.

***

The first article discusses ethicist Athur Caplan’s argument for a blanket policy that organ transplants not be granted when people have “disabilities that impair you so that you cannot have any quality of life.” He used being in a “permanent vegetative state” as an example, but conceded later that people with Down Syndrome should be eligible for transplants because “they enjoy life,” and “they contribute to their families, and their families enjoy having them.”

Well, that’s very gracious of him.

What I do like about Arthur Caplan’s article is that, while he does take a stance on his position with which I’m uncomfortable, he also puts out a call for dialogue about where the line at which organ transplant should cease to be granted (and while disabled people aren’t mentioned specifically, he does recommend that disability groups and the “transplant community” be involved), and a fairly comprehensive list of talking points. I think that disabled people and their advocates have plenty of talking points to add, but I’m going to get to that.

I think that this was one of the most important talking points on his list, from a paper by SD Halpern and D Goldberg that recently appeared in the New England Journal of Medicine: “Some healthcare professionals contend that cognitive function should not be a basis for allocating organs because it allows healthcare providers to decide that some lives are more valuable than others.” We know from the organ transplant denial cases involving Amelia RiveraPaul Korby, and Lily Parra that this is already happening.

I want to move on to the next article and come back to this one.

Peter Singer, Disabled People and Rape

The other article that grabbed the disability community’s attention this week was about philosopher Peter Singer’s recent editorial in the New York Times about the Anna Stubblefield case. Anna Stubblefield was a professor at Rutgers University when she had sex with a disabled student, D.J., and was charged with rape. She was convicted in 2015.

Nathan Robinson’s “Current Affairs” article about Peter Singer’s editorial is very good and should be read in whole. It shows how Peter Singer actually argues that in the court proceedings for the Anna Stubblefield case, D.J. was treated in an unfair and ableist manner. Writer Astra Taylor interviewed a disabled woman who was in the courtroom during the trial and who absolutely agrees with Peter Singer.

Robinson’s article doesn’t explain, however, why Peter Singer then couldn’t leave well enough alone and suggest that if a person is intellectually disabled to the point where they don’t understand consent, they can’t withhold it, and therefore they’d presumably enjoy sex whether it was forcible or not. D.J. couldn’t speak, but even if they presumed an intellectual disability, Peter Singer posits, he must have liked the sex because he wasn’t struggling.

It reminds me of the 2014 case in Georgia where Judge Christopher McFadden overturned the “Guilty” conviction for a man that raped a woman with Down Syndrome three times in 12 hours because she didn’t “act enough like a victim.”

As Robinson says:

“The New York Times therefore just published a philosophical defense of raping disabled people, and Peter Singer has — somehow — reached a new low on disability issues. (Actually, to be precise, an argument that it’s not clear what the harm is in raping disabled people, along with the implication that non-consensual sex acts against physically and mentally incapacitated people aren’t actually rape anyway if the victims do not know what consent is.)”

Peter Singer’s argument is disgusting, but not unexpected. He has in the past:

  • Debated whether it might be moral to kill disabled babies, and decided that in some cases it might be immoral to let them live.
  • Said he couldn’t raise a child with Down Syndrome because it wouldn’t make him “happy” not to raise someone that would be his “equal”.
  • Suggested that the lives of intellectually disabled people are worth less than those of non-disabled people.

Peter Singer is a utilitarian philosopher. It’s important to note that, not just because of the reasons (outlined by Robinson in his article) that utilitarian thought just doesn’t work well when you use it to discuss people, but also because it makes so many damn assumptions.

And we all know how much I love those.

Utilitarian Thought and Assumptions

Let’s go back to Arthur Caplan’s article for a moment.

Because there aren’t nearly enough donated organs to meet the demand for them, the approach to how people get them has always been somewhat utilitarian, to make sure that they go to people who need them the most, who will get the most use out of them, and who will follow the post-transplant regimen properly. It’s unfortunate, but difficult decisions need to be made when allocating scarce resources.

However, there’s an assumption at the foundation of Arthur Caplan’s argument that intellectually disabled people are in a different class than non-disabled people. Not only should their suitability depend on the practical criteria outlined above, but also on a determination that it’s worth keeping them alive to begin with: Do they “enjoy life”? Do they “contribute to their families”? Do their families “enjoy having them?”

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

If you could go along with Arthur Caplan’s reasoning and (apparently) believe that those criteria are even remotely fair to propose, how would we measure how well they’re being met? What evidence of being “enjoying life” would a transplant team be willing to consider? Who does a person have to make “happy” to be considered? What barriers to potentially enjoying life (or to expressing that enjoyment?) should be taken into consideration? What does it mean, to “contribute to a family”? Does family have to be biological, or could it be friends? Should those two types of families be weighed differently, and how? What about people who, through no fault of their own, have seen little or nothing of their families and haven’t had the chance to make that many friends (like those that have been instititionalized for most of their lives)?

Is it right to assume that, in the absence of information from the person, that just because they can’t have what a non-disabled person considers a good quality of life, that they’re unhappy and wouldn’t want their life prolonged by an organ transplant?

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

Peter Singer assumes that there’s no harm when an intellectually disabled person who doesn’t understand consent and doesn’t struggle is raped. He can’t know that. He can’t read minds. He assumes that a low IQ = no inner life. As a bioethicist, he should know better. His assumption that everyone responds to rape by struggling is easily refuted. I hope that by now someone’s made him aware of just how ignorant he sounded.

I’m willing to believe that Arthur Caplan actually wants to do some good, even if he’s misguided, but I suspect that Peter Singer is really just an ableist fuck who tries to use ethics to justify his positions. And I’m sorry that the New York Times saw fit to print his tripe without a balancing article correcting his assumption about how rape could affect an intellectually disabled person, and that advised that lack of consent doesn’t imply consent. Don’t have sex with someone if you don’t have their consent, period.

Bottom Line

As icky as these articles are, I’m not all that shocked by them.

I wish I was.

It’s just not a shock anymore to that these attitudes like these are still out there. It’s disheartening, though, to always come up as the option that’s not as preferable in these utilitarian reasonings, especially when the ableism is so obvious and especially when it affects resource allocation and safety on even as a hypothetical.

True equality still seems a long way off.

Save

Hallee Sorenson is Autistic. Please Send her Birthday Cards.

So a picture is making the social media rounds this week of a young autistic woman, Hallee Sorenson, eating cake alone  on her 18th birthday. I’m not going to repost it because I suspect that  it was posted and has made the rounds through the media without her permission. But the photo went viral because Hallee invited her class and other teens in the community to a bowling party to celebrate her birthday, and no one showed up.  No one even sent an RSVP.

Content Note: Ableism, rudeness

"Autism" in brightly coloured block letters against a black background. Keyword: Hallee Sorenson

Image Description: “Autism” in brightly coloured block letters against a black background.

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There’s no disputing that it’s a sad story. The same thing happened to the daughter of a good friend of mine when she turned twelve. I wasn’t at the party, but when I heard about it I was furious. Livid. Growing up in my house, when we got invited to a kid’s birthday party and there weren’t prior plans for that day, we went – we’d been invited, and it was polite to go.  Even if we didn’t like the kid that much, we were expected to suck it up, because it was only a couple of hours and at least there would be cake and ice cream. However, the parties where the whole class was invited were done by the time I was ten, making way for small-group sleepovers and movie parties and eventually the more adult parties of high school. But we’ll get to that later.

I was not so livid about the failed birthday party that my friend’s kid experienced that I posted on Facebook about it and solicited cards to make her feel better. That never even occurred to me. But it did to Hallee Sorenson’s cousin Rebecca, who posted this, along with the picture of Hallee at her birthday party, on her Facebook page:

“Hallee is an amazing person-a person I am proud to be related to. She is also a person who just happens to have Autism. She has never let that small detail define who she is as a person-which is why I refuse to use it as something to describe her.

“She had been so excited to have a party with her friends. She wanted to go bowling, have fun, and eat cake and Ice Cream. Invitations went out to her classmates at school and to other friends in the area. Hallee sat at her party anxiously waiting for her friends to arrive so they could have fun….but Hallee’s friends would never arrive. Not a single one. Below is the picture of her celebrating alone – eating her birthday cake. My cousin is a beautiful young woman who will always have the mind of a child…so as you can imagine, she was heartbroken and beyond sad. She was hurt…”

Rebecca also wrote that Hallee “loves getting mail- this would be the best birthday gift she could ask for. If you could find it in your heart to take a few mins out of your day and send her a card, I would be forever greatful,” She included Hallee Sorenson’s mailing address.

Transcript

Hallee’s Mother: Hallee is a sweetheart. She is a people-pleaser, she’s affectionate, she’s empathetic, she’s sympathetic, she loves everybody, she, um, has never met a stranger, everybody is a friend. We’d planned, um, a couple of months in advance for her friends at school to come. She asked for a bowling birthday, that’s the party that she asked for, so we went all out and we didn’t get a single RSVP. But I wasn’t super alarmed about that because the year previously we didn’t get any either and yet everybody showed up. But the day came and we got everything ready and nobody came, nobody called, nobody showed up. My sister had been texting me from Texas saying, you know, “How’s the party? How come there are no pictures yet?” and I stood behind a pillar, I was crying so hard I just couldn’t even talk, and I took the picture and I said, “There’s nobody here.” And she and her husband were driving and they had to pull over. They were both crying. It was terrible, and what do you do? You just feel devastated. It’s- it’s – autism is a super lonely condition, not just for the person who has it, but for their family, because there are so many things that we can’t do. We can’t go to a movie. We can’t go to a family reunion. When these kids finally want to do something that’s typical, um, you go all out, and to have nobody show, well, it’s – it’s absolutely devastating.

She (Hallee’s cousin) said, you know “Hey!” you know,  “I’m going to try and get some cards for Hallee” and then she shared it on her own personal page thinking, you know, friends would pitch in, and it just took right off the charts. It went from page to page and started jumping by the thousands. We’ve got people from Vietnam that have contacted us that want to send her cards, and churches and schools all over the UK, Scotland England. It’s amazing. I mean, how do you respond to something like this? They just want this kid to smile on her birthday. I mean, how do you say thank you enough for that? We are just so grateful. So grateful. And it’s so exciting for her. And I think that people are, you know, um, ready for something happy. People want to do something good  for somebody, and this fits that bill, and they’re going to do whatever they can to make sure she’s happy, and that’s the best feeling

Hallee: Friends would write me so that they can good, celebrate me. And they can be good friends and love me so much. And wish me happy birthday. And best friends in the world. Okay?

***

I’ve discussed this story with a variety of people, and read many comments on the media coverage. The disabled people that I’ve seen comment on it have almost always reacted negatively, for a variety of reasons, and are talking about it mainly amongst themselves. I don’t see their comments on the media accounts, and there may be a good reason for that: when I see anyone’s public comments deviate from the narrative that soliciting cards from strangers over the internet to help lonely, autistic Hallee Sorenson feel loved and valued, they’re attacked.

“Congratulations. You’re a horrible person.” someone said in response to a comment suggesting that brought up some of the issues that disability advocates are raising.

Brace yourself, folks. I’m about to show what a horrible person I am.

Hallee Sorenson’s Party

Even though Hallee Sorenson may “always have the mind of a child”  (I could do an entire blog post on how unfair it is to assume what developmentally disabled people do/don’t understand and the dangers of treating them as “eternal children” on that basis, but I’m going to just note that these are issues and move on), she was legally an adult at 18. She should have had the opportunity to plan her own birthday party to the greatest extent possible. Apparently she did say that she wanted a bowling party, but then, in her own mother’s words (see video), “we went all out.”

What does that mean?

Who made the guest list for this party? If Hallee Sorenson was the one who said, “I want to invite my classmates and these other teenagers for bowling and cake,” someone should have said to her, “You can do that. Your choice. But 18-year-olds usually don’t go to cake and ice cream parties, and not everyone likes bowling. The people that you want to come may not come.” When my friends and I were eighteen, we had part-time jobs, family obligations, and homework to do during the day on the weekend so that we could go out on Saturday night and do more homework on Sunday night. I would have sent an RSVP to Hallee’s party if my my 18-year-old self had been invited, and I would have asked her about it on Monday when I saw her at school.  But would I have gone? Probably not.

Unless she was a friend with whom I habitually spent time and not just an acquaintance. But was the guest list actually made up of Hallee’s friends? Or was the goal to get as many people there as possible? Was that goal Hallee Sorenson’s or her mother’s?

Either way, Hallee Sorenson ended up with a party that eighteen-year-olds weren’t likely to attend – regardless of her disability, the party was somewhat set up to fail. But we’ve all experienced disappointment (even six-year-olds, if we must go with the idea that she’s processing events at that level of cognition), and it’s important that everyone learn to deal with disappointment and realize that life goes on. I had a shitty twentieth birthday. I didn’t get a story on CBS. I survived.

But I wasn’t disabled at the time.

Because Hallee Sorenson Is Disabled…

…it was okay to take an embarrassing story of how no one came to her birthday party and put it up Facebook, along with her photo and mailing address, without her permission.

It was okay for media outlets to pick up the story, use images of Hallee Sorenson (without her permission, it seems), and talk to everyone but her about how she felt about the birthday party.

Cards and presents from strangers are seen as an acceptable substitute for the validation that Hallee would get from real relationships with her peers.

Don’t get me wrong. I don’t doubt that Hallee Sorenson’s cousin had totally good intentions when she asked the world to send birthday cards. And what parent wouldn’t want to do something, anything, to erase the memory of a birthday party where no one showed up? But how would any of us feel if we found out that we got a mountain of birthday cards because a family member put up a Facebook post asking strangers to send them and the news picked up on it?

“She’s going to see that a lot of people want to be her friend and want to wish her well,” her cousin told CBS in a phone interview.

I totally wish Hallee Sorenson well, but I’m not sending a card. I’m sure that she’s a lovely young woman, but I’m not her friend, and me sending her a card doesn’t make me her friend.  Me sending her a card does not mean that I’ll do “friend” things like visit her or call her on the phone, that we’ll get together to do things that we find fun, that we’ll be there to talk to each other when things get rough. It doesn’t even mean that she’d get a card from me next year when this story is long gone from the public consciousness and people have forgotten it was in June that they saw the sad story about the “heartbroken” autistic girl in Bangor  and sent a card so that *they* would feel a little less sad about what happened to her.  The idea of her getting thousands of cards believing that these people will be her friends makes me feel sadder than the idea of of people not showing up for her birthday. It was shitty of them not to RSVP and say that they were going to do it, but at least it was honest – if they’d wanted to be there, they would have come.

This card business is just a deception. No one would even have thought to perpetuate it on a non-disabled person because of all the liberties that they took with her image and her information (and shame on the media for going along with it). And what has been in the almost-year since Hallee Sorenson’s birthday to get to real issue of why people didn’t come to the party? Was it simply that the party was too much for children? Did they pick a bad weekend? Or was it deeper? Was Hallee having trouble with her peers? Did she need some social skills coaching?

Or were her social skills fine, but she needed to get better friends? Like, ones that would actually care about her enough to come to her birthday party, or at least enough to tell her why they couldn’t?

A friend of mine who *is* going to send a card said, “I just feel sad for her.” I do too. Hallee Sorenson didn’t ask for any of this – not the birthday party where no one showed up, or anything after.

Hallee Sorenson’s family is celebrating her birthday with a private family party this year. I hope that she enjoys it, and wish her many happy birthdays to come.

 

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Juliette Beegle, 15, and Her Family Asked to Leave Airplane After Emergency Landing. Was It Because She’s Autistic?

Content Note: Airline travel issues, ableism

Cartoon airplane flies through the sky. Keyword: Hannah Cohen

Image Description: Cartoon airplane flies through the sky.

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I’m sure that some of you have heard about Juliette Beegle, the 15-year-old kicked off an United Airlines airplane with her family, ostensibly because she’s autistic.

(Oregon Live also covered Juliette Beegle’s story, and the comments are very interesting.)

I say “ostensibly” because the message board discussion that I’ve been watching on this story has had people point out that the call to have the plane make an emergency landing and have Juliette Beegle and her family disembark may have been made for a neurotypical person too.

Let’s take a look at Juliette Beegle’s story.

Juliette Beegle’s Story – The Basics

Juliette Beegle does not communicate using words, and her frustration levels can get high, especially if she hasn’t eaten. On the day in question, she hadn’t eaten before getting on the airplane, and didn’t want to eat any of the snacks that her mother, Donna Beegle, had brought. Sensing that acting-out behaviour (I don’t like the term “meltdown”, but have no problem with other people that do) was imminent, and knowing that something hot to eat would calm Juliette, Donna requested a hot meal from the flight staff. She was told that only first class passengers received hot meals, but that they could offer her a cold sandwich.

Donna and her husband explained what kind of acting-out behaviour Juliette might go into if she couldn’t get a hot meal, including that she might scratch lash out and scratch. The crew eventually brought a hot meal from first class, which did calm Juliette. But not long after, the plane landed in Salt Lake City, and Juliette Beegle and her family were escorted off the plane. They were rebooked on another carrier (presumably at no cost to them) to continue their trip. Read more about Juliette Beegle’s story.

Juliette Beegle – The Discussion

The discussion that I’ve been watching about this has been very interesting. There’s been  acknowledgement among most of the participants that airlines in general seem to know very little about good (or even adequate) customer service for disabled people. As people who work outside the industry (most of us, anyway) we don’t know what kind of disability training airline employees get, but there are enough examples of it being seemingly absent in their dealings with disabled people that definitely make ableism in the airline industry a trend. Airports are becoming a bit more responsive to challenges involved with autism and flying by offering “dry runs” through airports for families, to help autistic family members to see what’s involved with flying and to help the rest of the family fine-tune the plan for handling the trip through the airport, but there’s still a long way to go.

There was general agreement that the captain and airline staff overreacted.

However, even from some participants that said this, there was another perspective.

For safety reasons, because of the age we live in, airlines are very cautious about everything right now. A woman who did have some experience with the airline industry pointed out that even a small request that deviates from normal routines, like serving a hot meal to a passenger that wouldn’t otherwise get one (especially outside the meal service period), keeps the staff from performing other functions that they need to be doing at that point in the flight and sets a dangerous precedent of “You made an exception for that person – why can’t you fill my special request?”

As well, the family basically threatened that Juliette Beegle may become violent if she didn’t get what she want. Autistic or neurotypical, that may have been a risk that the pilot felt that he/she couldn’t take.  After all, Donna said that Juliette would be okay if she got a hot meal, but what if that wasn’t the case? What if her frustration continued to escalate and she actually did scratch another passenger?

And, as another person asked, was it reasonable of the parents to expect that the airline could produce hot food for Juliette Beegle on a dime? Knowing that hot food was what could calm Juliette Beegle before she got to the point that she scratched, was it not up to them to either make arrangements with the airline to have use of the microwave and bring something on board that could be heated up, or to carry food on board in a container that would keep it hot the length of the flight?

Those sorts of questions need to be asked when any sort of person with special needs is traveling by air, not just an autistic person. I think it’s reasonable to expect disabled passengers to ask themselves, “What if there’s a chance that, due to my disability, I need something in the air that the staff may not be able to provide?” and to either do what they what they can to bring it on board (admittedly more and more difficult due to carry-on restrictions) or to call the airline prior to the travel date, explain the requirement, and see what can be worked out.

No one can plan for everything, of course. But I don’t think that in the moment when everyone’s guard is up is the moment to start explaining the finer points of autism and making what can come across as threats, as a passenger on Juliette Beegle’s flight observed:

“Really I saw it as a threat to the airline and the flight attendants to say, ‘Well if we don’t get this, this is what’s going to happen,”

It’s an interesting perspective.

Juliet Beegle – To What Extent Do Airlines Have the Duty to Accommodate?

Should airline disability training include at least enough on autism so that if flight crew are alerted that acting-out behaviour is imminent and there’s something simple that they can do, like give a hot meal to a person that normally wouldn’t get one, that they should do it?

I think so. That’s pretty basic stuff. If the pilot and crew had received some autism training, they might have tried the first alternative suggested by the people who knew Juliette Beegle best sooner, seen her calm for a longer period and been satisfied that she was going to stay calm, alleviating the need to land the plane.

However, airlines need to take the potential for physical violence from anyone seriously, especially in cases where they can’t help so easily.  I think that the emergency landing and deplaning the family was probably an overreaction in this case, because Juliette Beegle’s parents were there to talk about how she normally doesn’t have issues with flying, how this trip had been different because she hadn’t eaten beforehand, and could vouch for how a hot meal generally calmed her – it wasn’t as if this was a passenger travelling alone who said, “I’m anxious, I need a hot meal or I might scratch people” with no other information to inform their decision.

It comes down to that idea of balancing everyone’s rights, which isn’t always difficult to do – but sometimes it really is.

Juliette Beegle – Do Disabled People Have a Responsibility?

I thought about this a lot.

I think that disabled people (or caregivers) need to be mindful that we have to know what it is that we need to function optimally and have a personal plan, to the greatest extent possible, for the times for the times, right or wrong, that we may not be able to get what we need.  I think that this is part of disability empowerment.

We also need to know how to identify when the way that people, trained or untrained, treat us crosses the line into unacceptable. As we saw from this case,  sometimes you can make an argument that a bad outcome is due to an institution’s decisions, sometimes you can argue that it was due to the disabled person’s decisions (or their caregiver’s), sometimes you can argue that it’s both…but sometimes it’s very clearly the institution’s (see this post by William Peace for examples involving airlines).

The discussion I was following on Juliette Beegle’s story got a lot into blame, but I don’t think I like looking at it like that. I think that there are lessons to be learned from it for the airlines and for travellers.

What do you think?

 

Intellectually Disabled Adults and “Age-Appropriate” Interests

Well, I’m back 🙂 I finished my 50 000 words for National Novel Writing Month with a day to spare, took a couple of days off, and am ready to get back to my regular writing routine. And to start it off…yesterday I got an interesting email from a colleague with some thoughts on the about the perception within the support community that it’s important to encourage intellectually disabled adults to engage in “age-appropriate” activities. It got me thinking.

Content Note:  Ableism, infantilization, double standardsArt supplies arranged to make a square - paints in tubes make up top of the square, with pencil crayons in a box underneath to complete the right side and half the lower lower side, and markers and crayons to make up rectangle to complete the square. Keyword: intellectually disabled adultsImage Description: Art supplies arranged to make a square – paints in tubes make up top of the square, with pencil crayons in a box underneath to complete the right side and half the lower lower side, and markers and crayons to make up rectangle to complete the square.

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I’ve been lucky enough to see agencies wrestle with this idea, and come out on the side that if intellectually disabled adults find joy in an activity that isn’t “age-appropriate”, there’s nothing wrong with it, but apparently it’s still an issue for some people. I can see reasons why it’s a concern – intellectually disabled adults tend to be infantilized by society (and even by agencies) as it is, and why would staff want to encourage behaviour that feeds that dynamic?

But, as a society, we’re reasonably tolerant of non-disabled adults who choose to engage in “non-age-appropriate” activities. Comic Con conventions are full of adults who love to play dress-up (and their costumes are awesome, by the way). Plenty of adults collected Beanie Babies when they were the rage. I love to play with Lego, and doesn’t everyone have a favourite Disney cartoon?

And, as my colleague suggested, when non-disabled adults draw we call them artists; when intellectually disabled adults colour, we label their interest in art “non-age-appropriate” and take the crayons away.

Intellectually Disabled Adults are…Adults

I have a friend who collects knives. I don’t get the appeal. But I’m not interested in telling people what their interests should be (unless pursuing those interests is harming others), whether it’s a very “grown up” interest like collecting the labels off of wine bottles or whether it’s making window decals using a kit (which I used to do). I’d like to think that most adults feel the same way about other adults with whom they associate. But even though I think there’s increasing awareness that (gasp!) intellectually disabled adults are adults too and should have the right to choose their own interests, regardless of how “age-appropriate” they are. there are still some problematic attitudes about the whole business.

It’s a double standard. Especially so in light of the fact that while we insist that intellectually disabled people have “grown up” interests, we all too often don’t acknowledge that they’re grown-ups in other life spheres:

  • We don’t provide comprehensive relationship training and sexual safety education
  • There’s still not nearly enough education about self-advocacy skills and talk about why they’re important
  • People still don’t have much control when it comes to their services and who provides them.

These things aren’t constants across all agencies, of course. Some agencies are doing a fine job with relationship training and sexual education, and are making great strides with self-advocacy. And Ontario’s transformation of services over the last few years has been all about giving people more control over services.

However, it’s important that we as support people get our collective heads on straight on whether we want be a culture that supports all the adult rights of intellectually disabled adults, whether we’re going to continue on this path where we look at them as children (which is not only unfair to the people we support, but sends a message to society that it’s okay to do so as well), or whether we’re going to go between both points of view, picking and choosing when we view intellectually disabled people as “adults” according to when it’s comfortable to do so.

The last option isn’t acceptable, in my opinion. We have to go one way or the other.

And don’t we all know which way is the right way to go?

 

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When a “Token” and an “Activist” are the Same Thing

Something that I wrote in a comment the other day got me thinking. I’ve never felt awkward about being the only person with disabilities in a group, or the “token disabled person”, if you will). I credit this to my experiences with people with disabilities before the stroke, telling people that they had the right to try whatever they want, and to having a support system that really encouraged me the same way after I had my stroke. I’ve definitely been aware that I’ve been the only one in groups like writing circles, meetings, or my ballet class with a visible disability, but the disability is rarely my biggest worry. So I’d never really considered, until I commented on it earlier this week, that when someone with a visible disability is *the* person with a disability in an organized activity, they’re automatically an ambassador for the rest of us…whether they like it or not.  And if a person’s invisible disabilities are known to everyone in the group, and they’re the only one who has them, the same applies.

Cartoon of non-disabled kids, various ethnicities, crowd around white girl in a wheelchair reading a book. "Let's Play Together" is written in white block letters across the top. All across a blue background. Keyword: Token

Image Description: Cartoon of non-disabled kids, various ethnicities, crowd around white girl in a wheelchair reading a book. “Let’s Play Together” is written in white block letters across the top. All across a blue background.

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Tokens Aren’t Automatic Activists

It’s a big responsibility, and not everyone asks for it. Sometimes people just want to go to an activity and enjoy it, without the pressure of having to represent everyone like them.

I don’t think that humans deliberately regard people like this. It’s not meant to be hurtful. I don’t think we’re even aware that we’re doing it most of the time, and I probably do it myself. Perhaps it’s one of those “short-cuts” that the brain uses to categorize people, much like stereotyping. I think that we’re certainly able to rise beyond a bad impression of one person and not generalize it to everyone else, if we choose.

I just think, for people struggling to come to terms with especially acquired disabilities, it can be another layer of learning to deal with large-group social interaction that we don’t necessarily anticipate. I didn’t come out of the hospital ready to embrace activism, through my words or my writing or by being the token disabled person in an activity. I just wanted to get back to a point where I was feeling well enough in my new life to get back to feeling like me.

Activist on My Own Terms

But I wasn’t “me” anymore, was I? I was “me” in a wheelchair…”me” with a cane…”me with a weak arm…but not the “me” who had gone into the hospital for surgery.

It took me a while to realize that the new version of me was okay. And then accepting everything that came along with it, and then celebrating it, was okay.

But I do understand why some people are never comfortable in activities where they are the token disabled person.

Can you think of other groups that might be uncomfortable when members are the “token member” in a group?

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