Monday, August 1, 2016

Guide to finding a personal assistant

A personal assistant, when you’re disabled, is somebody who helps you do all the things you can’t manage on your own.
For instance, my assistant dresses me, fixes me food, washes me, helps me to the loo, pushes my manual wheelchair, turns me over at night, gets me into my car, hands me stuff.

Thanks to my PA, I’m independent. Not physically, of course. I’m independent because she allows me to fully participate in society. She removes physical obstacles or makes up for physical shortcomings that would otherwise keep me from living a life like anyone else’s. Is there a kerb in the way? She gets me past it. Do I have a craving for Japanese food, a class at university, a grocery run to make? She takes me where I need to go.
Thanks to an assistant who ensures my mobility, I’m a full citizen with an active role in the economy. Like everyone, you might say. Wrong! Do you know how many people with disabilities lack this crucial “helping hand” that would allow them to live an independent life, like everybody else? A lot, more than a lot: the overwhelming majority. Because who cares if a segment of society is shunted aside, with no right to a real life, left completely dependent on family members or institutional living, unable to perform everyday actions, like – oh, say – studying, working, travelling, going to rent a video, or buy a loaf of bread? After all, we have paunchy politicians to feed and an army to keep up.
The job of personal assistant has yet to gain social recognition in most countries. And that’s a reason for concern.
Some regions of Italy have independent living programs (Maria Chiara talks about them here), and in those cases, there’s some governmental funding: the sum (when there is a sum) varies from region to region. But more often, independence is something you pay for. Out-of-pocket. The independence that other people take for granted. In the UK, students can be “self-funded”, a polite way of saying you’re coughing up your own tuition. Well, PA services are very often “self-funded”, because we’re light years away from seeing them provided around the world. And for that matter, the process of hiring an assistant is also DIY. Maria Chiara and I have put together a nice little guide to recruiting the help we need, through a process we’ve tested out and fine-tuned over the years.

  • Objective: to find a young woman who’s mentally stable, reasonably robust (as strong as she needs to be), preferably with empathy, ideally with a sense of humor, flexible and discreet.

Step 1) Prepare a clear, succinct advert, with tear-off contact info. Giving your email address instead of the usual phone number is a strategic move that will help you field replies and streamline the screening process. Post your notice in as many shops as possible: at the bakery, hairdresser’s, stationer’s, gift shop, art gallery, wherever they’ll let you put one up. Be sure to use a font that’s big enough to catch the eye. Fill out a form at your local youth employment centre, post the job in free weeklies or on university notice boards. An even more effective channel is the internet; the Italian sites we’ve posted on are Kijiji and You have to register, but it’s definitely worth it.

Step 2) Applications start to come in. They run the gamut: people who send only a CV, people who add a brief cover letter, people who just spit out a phone number and wait in vain to be called back. And then there are those people: the ones who don’t meet your basic requirements for age and gender (in our case, female and 24-30) but won’t let that stop them.
We answer applicants with an email along the lines of “Let us tell you a little more about the job”, with a more detailed explanation of the duties involved. Then we ask for a CV (or a summary of what they’ve done before) and a brief self-description. The point of the CV is not really to see their previous experience, because the assistant doesn’t need to have worked in this field before: it’s the disabled employer who will train the helper according to their specific needs. The point of the CV is to get their contact info (because on classifieds sites the email address is often hidden) and other useful details, like their hometown or where they went to school, so you can plug them into every conceivable search engine. The goal is to collect every last bit of information out there on the person you’re going to be screening for this delicate position. Being able to look people up on Facebook through their email address and phone number is often decisive, but Google can also reveal a lot. The self-description, on the other hand, helps you figure out if the person has their head on straight, is unhinged, or has bizarre notions about people with disabilities. Here’s a little gem from a candidate whose CV was flawless and who was in the right age range.

“Hello Elena,
I’ll try to keep it short and sweet: I’m a very good listener and fairly curious about the world and everything in it, but don’t get the idea I’m a chatterbox. My conversation is always tailored to the person I’m talking to. If what I’m hearing doesn’t interest me much, I manage to slip out of the conversation with regal charm. I’m cheerful, polite, and have a sunny disposition. Stubborn and unflagging when it comes to life’s everyday tasks. 
I’ve been lucky enough to experience a range of environments both in work and in my own life, but the one constant throughout has been a healthy dose of courage.
I love nature, and prefer a few hours of walking outdoors to shutting myself in a mall or taking a “walk” through the shops.
I love art, culture, museums, film, theatre, exhibitions, readings and gathering places that let people experience something new.
I like spending time in the kitchen, reading recipes and trying to recreate them for my dinner companions... 
I’m moody in bad weather, but who isn’t? Who wouldn’t like an eternal spring of balmy temperatures and the kind of mild, wholesome sunlight that nourishes the world without disturbing human beings?
If you think it would be interesting to talk in person, I look forward to hearing from you...”

Hmm, shall we pass?
N.B. If you’re in a rush to find an assistant, you might want to take a second look at the applicants who are older or younger than you had in mind.

Step 3) After making a shortlist of candidates, we call them to set up interviews. Take time to carefully consider the applicants. This is not just a physical job; it involves living in close contact with the person.
When we interview someone, it’s almost always with three of us there: Maria Chiara, our mother and me. It’s important to compare impressions afterwards, because they may surprise you; three people can notice many more little details.

During the interview you should talk, get the candidate to talk, explain things, ask questions, demonstrate the main tasks the assistant will have to perform. Dexterity and practicality are just as important as a good personality, but those are traits that may only emerge after a while. Or they may not!

Step 4) Do a test period of a few days. Often, alas, there’s no time to test out all the applicants and you have to make a hasty choice: sink or swim. In any case, a few days will tell you little or nothing about how it will go.
In Italy, we’ve used the model contract for live-in care, though we managed to change the name of the job from badante (carer) to assistente (assistant).

Step 5) Train your assistant. This could be a rapid process or a slow one. The important thing is to say right away if something is wrong, and explain how you want things done, so that the person doesn’t pick up bad habits that will be hard to change later. At this early stage, the assistant is particularly receptive and eager to learn.

Step 6) Almost there! We might be over the hump. But do keep in mind, you’re not married to this assistant until death do you part, and if you’re not happy with their work, you can send them on their way. That’s a difficult choice, because you build a personal relationship, because giving due notice is expensive, and because finding someone new takes a while. But it’s your quality of life that’s at stake.
Living with someone always means having to adapt a little. With assistants there’s always an initial period of adjustment, when you’re particularly patient about any shortcomings.
It’s important not to overdo the patience, though, because in a society riddled with misconceptions about people with disabilities, where the personal assistant and disabled employer are rarely encountered figures, it’s all too easy to find yourself objectified; it’s all too easy for the assistant to confuse personal care with the right to judge your choices, butt in where they shouldn’t, or fail to respect your decisions.
It’s important to establish – in your own mind, first and foremost – what’s acceptable and what’s not.

But luckily, we still have that whole lovely list of applicants to fall back on. Next, please!

These wonderful and accurate illustrations by Moreno Chiacchiera are from Elisabetta Gasparini’s brochure on independent living (in Italian), which you can find here.

Translation: Johanna Bishop

Monday, March 21, 2016

Funding, not services. Independent living vs. care agencies

“We don't want agencies! Let us choose our own assistants”
(from a sign held by Raffaele Pennacchio of the 16 Novembre non-profit organization during a sit-in)
During my years at university, the extra costs incurred by my disability (my assistant’s wages, weekly transport between home and university) were mostly covered by my parents. The paltry amount conceded by the local authority wasn’t granted directly, but was converted into a service to be provided by a local agency. Nothing out of the ordinary in Italy - except the service was terminated abruptly after a year because the local authority suddenly realized I was too big a cost for them. And the reason for this is that providing services through an agency entails an incredible waste of money: most of it (and I really do mean the vast majority of the local authority’s funding) went to the agency itself, to cover administration and service delivery costs. If they had paid it to me directly, I could have used it to employ my PA directly for all three years of my university course! Instead, we then had to keep paying her out of our own pockets, simply because giving the funding directly to the users who need it seemed - and still seems - to be unconceivable.

Elena and I found ourselves in the same shoes when we were granted the “Home Care Premium”, a benefit for non-self-sufficient people with disabilities who are the dependents of state employees. Here too, there was a catch: the allocated funds were not granted directly to the beneficiaries, but went through an agency that used them to provide two months of home care in the afternoons. At the end of the day, however, this meant that the agency’s cut was over half of the total benefit - we were shocked to realize that if it had been given to us directly, for the same sum we could have employed two PAs directly for at least four months!

In my city (but I’m afraid that it’s not an isolated case) there is a real racket in place, meaning that funds for disabled care cannot go directly to the beneficiaries, but must necessarily pass through agencies and cooperatives, who all take their cut.  Sadly, this also subtly implies that disabled people and their families are incapable of managing public money independently.
The services supplied through agencies can also come with absurd limitations. In my city, for example, users can travel in the educators’ cars (“educator” is the pompous and vaguely offensive name the care assistants go by) but the educators can’t drive the users’ own cars, thus creating enormous difficulties for people who can only travel in their own specially-adapted vehicle. The educators are also unable to accompany users outside their home town, as if people with disabilities never needed to travel anywhere else. Then there are the hateful assessment forms and monthly reports that the educators have to fill in. These contain absurd questions about the user’s cognitive and relational capabilities, which not only trample all over privacy and dignity but are not even applicable if the user only needs assistance related to motor impairment. (Or maybe they have to set the tone and act as an educational service to somehow justify the fact that they always take the biggest slice of the pie for themselves?)

As the cherry on the cake, during a recent local demonstration against benefit cuts for people with disabilities, the managers of the main care agency in town told their staff (educators, who are also affected by the cuts) not to participate in the protests, not to support the families concerned, basically to have nothing to do with it. Now you tell me… Isn’t that a racket? It’s part not only of the all-too familiar Italian pattern of senseless waste and profiteering, but also of the patronizing top-down perspective of disability that continues to dominate. The (very narrow) slice of welfare reserved for people with disabilities in Italy is distributed far more as services than as direct benefits, but services, however they are differentiated, will never be able to be meet the requirements of all their recipients.
Disabilities come in many forms and produce many different needs. To give just two examples, some people are unable to walk long distances and only need help in doing the shopping, going to the post office and so on, while others are completely non-self-sufficient and require ongoing assistance. Some might only need a few hours in the afternoons, while others need support only at night. In Italy, very few non-self-sufficient people are provided with enough personal assistance to enable them to lead a dignified life with an adequate degree of independence from their family - unless they’re paying for it out of their own pockets. A standardized, restrictive service such as that provided by the agencies is a poor substitute. What’s really needed is personal assistance available not only (and not necessarily) in the mornings and afternoons, but also in the evenings and at night - and it doesn’t always have to be through qualified staff.

In fact, while specialists are needed for some conditions (you can’t ask just anyone to change a catheter or help an autistic child with their homework), Elena and I, and indeed most people with disabilities, don’t need “expert” care (even if vested interests would have you believe otherwise) and all that’s required is patience, listening skills and a willingness to learn. You don’t need to have studied anything in particular to lift me from my wheelchair or take me to the toilet. You don’t need a specialized course to prepare a snack for me, drive me to the city center or hand books out when I’m studying. What you do need is some degree of natural empathy, sensitivity and intelligence, but that’s another story.

The ideal solution (although in Italy it’s still largely to be put in practice) has already been found by the only ones really capable of finding it: people with disabilities themselves. This solution is embodied within the principles and practice of Independent Living. According to the philosophy of this international movement, which arose in the USA in the Sixties and later spread to Sweden and the rest of Europe, people with disabilities are the best experts on their own needs.
The principle is very simple, aiming for the full integration of all by eliminating both architectural and cultural barriers. It hinges on self-managed personal assistance, obtained through direct funding by institutions. This is completely different from the standard care provided by social services, as it’s no longer the service provider which decides when and how to provide the service but the beneficiaries (the people directly concerned) who specifically request a service and detail their needs (how, when, where and by whom). In other words, the disabled person is no longer a passive recipient of care but is an active subject, in essence acting as an employer. The perspective has thus shifted from the patronizing medical model - that has far outstayed its welcome - in which people with disabilities have to be “taken care of” and must adapt their needs to standardized services. Under the new system, benefits are paid directly to the beneficiaries, who can use them independently in the way that works best for them, thus obtaining a personalized service tailored to their specific needs.

The problem is that in Italy this has not yet become established practice (as it is, for example, in the UK, where people with disabilities are eligible for so-called “direct payments”), and the various local authorities are merely “requested” to provide funding. In practice, this results in indifference and inertia and produces social workers who are less informed than the people they are supposed to be assisting (although that’s nothing new). The reality is that you can’t get funding without a fight to the death (in fact, we still haven’t obtained anything). As usual, however, some regions are one step ahead. Florence grants up to 3000 euros per month for Independent Living projects (hats off to Florence!) -  while that might seem quite a big amount, it’s absolutely necessary for anyone who is completely non-self-sufficient. This sum will enable you to pay a living wage to two personal assistants (the minimum needed to ensure adequate shift changes). The principle is that any user can decide how to manage the assigned budget, and the Agencies for Independent Living offer legal assistance and expert advice provided by disabled staff.

Independent Living not only offers a long overdue change of perspective, transforming people with disabilities from passive objects of care to proactive participants, but also enables public money to be used in a forward-thinking way without waste or profiteering. Organizing personal assistance in this way offers clear savings in comparison with management through agencies: direct provision of beneficiaries with the amount needed to cover their assistants’ wages and taxes enables admin and management costs to be avoided. The beneficiaries themselves will be responsible for selecting, training, legally employing, and paying their own assistants, without any third party intermediaries. It follows that a far higher number of hours of care can be provided for the same cost to the public purse. The same is, of course, also true for nursing homes: even ignoring the fact that living in such facilities is undesirable and speaking in purely economic terms, it is evident that self-managed care costs much less. In the newspaper Corriere della Sera, FrancoBomprezzi suggested comparative figures of about €50,000 per year for self-managed care against €90,000 for residence in a nursing home.

Much has been done to put these principles into effect, but a lot of work is still needed. Independent Living projects are ongoing (although they don’t usually cover all needs) in many regions of Italy and more are being organized, but unfortunately it’s necessary to fight tooth and nail to get anywhere and in some regions not a cent has yet been seen. As things stand today, wheelchair users who are completely non-self-sufficient do not have the right to choose and employ their own PA as they would like (unless they have an independent income). In fact, they’ll be lucky if they don’t end up living in an institution.
This is largely a problem of mentality. In most cases people with disabilities are impeded from managing the (little) public money they are allocated and thus becoming their assistant’s employer. Perhaps it’s too strange to think of a tetraplegic employing, paying – and maybe firing – their own PAs, isn’t it? Or of someone with muscular dystrophy sifting through applications and worrying about paying their employee’s income tax. Because that’s not the view of us that the media chooses to spread. Instead, we are resigned and melancholy, or gloomy, hateful and mean, or at best joyful and brave and “full of strength”. But for sure, we don’t have to deal with contracts, payrolls and Christmas bonuses. And naturally, the parents of a severely disabled child should be grateful for the assistant sent by the local authority for four hours a week. After all, in the mornings grandma’s there to look after him. And his mum only works part-time now - and of course she didn’t mind having to give up her career, she would do anything for her son. Too bad that this son will grow up and become a man who won’t actually want to be a full-time burden on his mum. And his home will start to feel too cramped, and he’ll want to work or go to university.
And there will come a time when to achieve all this, he will want to become an employer.

Translation: Marie-Hélène Hayles

"God can heal you!": the distortion of religion

Being the object of a stranger’s pity is an everyday occurrence for countless people with disabilities. One of the many ways it manifests is in the piousness typical of certain religious environments; specifically, as discussed here, in the misplaced charity of perfect strangers who tell people like us that we can be healed through faith in God. It’s situations like these that traumatized me as a child during my visits to holy shrines and places of worship.

Something that Lourdes, Fatima, Medjugorje and Santiago de Compostela all have in common are hordes of sanctimonious and bigoted pilgrims. I’m not criticizing the places themselves, mind you, but  they are inevitably swarming with such people. If you’ve ever experienced the thrill of visiting one of these shrines as a wheelchair user or, in any case, as someone with an obvious disability, you’ll know it needs a great deal of courage. It is simply impossible, for example, to leave the main church in Lourdes without receiving at least three tearful kisses from old ladies or nuns, two or three exclamations of “poor thing!” from middle-aged women, and the ever-dependable “God can heal you! You just need to pray enough!” in various European languages, followed by a lapful of calling card-sized portraits of their favourite saints. 
And this is if you’re lucky, and the bigot of the day (because in most cases we’re talking about bigots) doesn’t actually talk to your companion as if you weren’t even there. In these cases the least offensive comments you’ll hear will be something like “you poor mother,” or “I’ll bet it’s hard, isn’t it?”. One of the gems I remember “collecting” in Medjugorje was a woman who said to my mother, in a tone meant to be sympathetic, “I once had a cousin like her, too. She’s dead now...”
And then there were the people who took a photo of me as a souvenir. Yes, really.
After such splendid booster shots of positivity, vitality and energy, I remember leaving the church in a daze, my self-esteem wavering, and seriously wondering how I must appear to the outer world. The risk of unpleasant encounters like these is especially high in centres of pilgrimage, but nor should we underestimate the danger lurking in apparently harmless everyday churches. Even if you’re there as a mere tourist and you’re busy admiring a gorgeous 13th century mosaic, all of a sudden you can find yourself surrounded by a group of pious busybodies telling you how much they feel your pain – and it is indeed painful to realize that you can forget about checking out that famous painting in the central nave now, because your priority has suddenly become getting out of the church (semi-)unscathed. 
But you won’t be completely safe even when you’ve made it out onto the street. All too often I’ve been approached by shifty-looking individuals handing out leaflets on the Messiah or even particularly sensitive passers‑by, all of them with the same aim: they want to heal me. Even at the tender age of twenty-three, I’ve seen enough to know that this problem is not limited to those of the Christian faith. I’ve also experienced similar episodes with Muslims, who are all too ready to present me with prayer beads, small chains and strange puppet-like icons imbibed with the power of healing me.
I believe that recommending faith in God to “heal” someone of their disability contradicts the concept of religion itself. The major world religions all ultimately share the same principles and basic values, in the sense that everything revolves around love and compassion, and all of Creation is good in and of itself. The idea that disability and disease are a divine punishment originates from a petty and boorish closed-mindedness, not from any religion. People who offer me help in the form of God to heal me assume that there is something - in the work of God, part of Creation - that has to be healed in the first place: in other words, that I am not OK the way I am, but just something broken, that has to be fixed and adjusted to so-called “normality”. This is not only indicative of someone who judges by appearances, but also insulting and presumptuous. What else can you call someone who stands in judgement over another person’s quality of life? On what basis can a stranger decide that another person - one they have only just met - has an inferior life and is necessarily unhappier, just because that person has a disability? It doesn’t seem to cross their mind that the disabled girl in front of them might have a richer, more satisfying life than the one who proclaims she should seek divine healing. Of course, it’s entirely possible that a disabled person has an unhappy life, perhaps because of their very disability: but again, who are these people to stand in judgement of God’s work?
This might seem a sterile argument to those who don’t believe in God in the first place, but that’s not the point. First, behaviour like this is arrogant and offensive to anyone with a disability, whether they are religious or atheist, and second, the people who proposed such miraculous cures to me all did it in the name of a religion. (So far, it’s only happened with Christians and Muslims, but who knows what other gems are in store for me!) It’s self-evident that I’m talking about a group of people with some kind of religious faith. Their behaviour thus blatantly contradicts what they claim to believe as Christians (or Muslims). Anyone who truly believes in God should see the good and beauty in all His Creation. For me, this is an essential part of any religious faith. Why, then, when the token bigot chances upon a young woman in a wheelchair who’s chatting and joking with a friend, is their first thought of how she can be healed? Instead of reflecting on the diversity of Creation, and perhaps on the suffering which is part of both Creation and our human condition or - why not? - on the joy you can experience despite your suffering, the bigot gives her a holy picture of a Saint and tells her to pray for Jesus to heal her.
Why is this? The answer lies in the morbid attitude that most of society has towards people with disabilities and in an erroneous interpretation of religion. Let me be clear: I am not attacking the concept of praying for a cure (even if I have always had my doubts on this point). Believers of any monotheistic religion turn to God to ask for help at difficult times, and having a disability can easily be considered as “something difficult”. No, what actually irritates me is the arrogance of those who tell complete strangers than they can be healed through faith in God. Their attitude may be due to simple ignorance or thoughtlessness, and they may have the best of intentions, but it still boils down to arrogance. It never seems to have crossed their minds that those strangers might belong to another religion, or be atheists, or even already be way more religious than the bigots themselves.

And maybe, of course, they don’t actually consider themselves as needing to be healed in the first place.

Translation: Marie-Hélène Hayles

Wednesday, February 17, 2016

Teachers: you’re doing it wrong

In my time as a pupil I’ve met several interesting kinds of teachers. Some treated me differently from my fellow students because of my disability, while others did not.
Here are three cases I have run into: these teachers have no idea how to deal with a disabled student. There’s no doubt that teaching is one of the hardest and most responsible jobs there is, and it really seems to have driven some of them crazy.

Let's take a look:

  • The stuffed shirt.

He’s oh-so-clever, and oh-so-pleased with himself. He excels at it all (or so he believes): teaching, dealing with students, organizing activities. And everything he says is the essence of wisdom (or so he believes): in reality, it’s irrelevant and inappropriate. He loves showing off, and jaws endlessly about his long-gone youth. He never fails to come and speak with me about something or other at the end of class, creating all kinds of non-existent problems. He claims he wants to help me but is terribly forgetful and muddle-headed.
Here’s a typical episode. Once he had to organize a school trip. For months beforehand, at the end of almost every class, he would discuss various details with me, and more than once he told me:
“Ah, Elena, you can leave yourself in my hands, I once took a blind girl on a school trip! So you can be sure that we’ll organize everything perfectly!” *he dances from foot to foot, bursting with pride*
Somehow, I doubt that that blind girl had the same needs as me.... and needless to say, the trip had more obstacles than a hurdles race: it was full of architectural barriers.

Another example: at a language course preparatory to an exam.

Teacher, to the class: “The exam couldn’t be simpler, of course you’ll all pass. You aren’t handicapped, are you?”

Me: the usual blank reaction I get when people use the term “handicapped” in a denigrating way. In fact, it’s no longer in general use and for me, it’s really just an old-fashioned term which has almost nothing to do with disabled people. It actually makes me much angrier when people use “Down’s” as an insult.

Teacher, making a leap towards me: “I APOLOGIZE, ELENA, I’M SO SORRY!!!”

I’m dumbfounded. I nod and think: is he really trying to tell me he thinks of me as “handicapped”?

Teacher: “SORRY, SORRY!!! It's not like me, it's not like me.”

He starts explaining something about the exam, and after a few seconds, off he goes again: “SORRY, SORRY! It's not like me!”

A few days later:
Teacher: “... And Hitler threw the abstract artists, whom he defined "handicapped" - sorry Elena - out of the Reich.”
Who’s he apologizing for? Hitler?

  • The insecure one.

He’s usually young and inexperienced, and is terrorized by anything outside his comfort zone - and that definitely includes you. He tries not to address you directly, and if he can’t avoid it he looks like a mouse caught in a trap. He much prefers talking to your assistant. He’ll do nothing to be helpful while you’re speaking with him. If he’s behind you, he’ll stand there like a stone, even though it’s obvious that you can’t turn your head to see him. He’ll never bend down to your level, even if he can’t hear you: instead, he’ll cast a terrified glance at your assistant, silently begging her to translate. If there’s an oral presentation at the front of the class, he’ll suggest that you stay at the back (who knows if he wants to save you the effort of moving and maybe getting into difficulty, or simply wants to avoid having to talk to you), while your classmates are obviously heading for the front. When you decide to ignore him and go to the front anyway, you’ll have to find someone else to help move the desks out of the way, because he won’t. If you’re entering the classroom and you make eye contact with him, he might decide to (slowly) come and hold the door open for you, only to change his mind halfway when he notices that, all things considered, your assistant is doing fine by herself.
Basically, he has a million and one worries and is frightened to death by anything new, especially if that something is a disabled student.

  • The bitch.

She’s the one who, on the first day of school, asks your assistant: “Has Elena got any brains?”. Just like that, blunt and brutal. She’s close to retirement and wears bright pink lipstick. She proudly defines herself as a “classics teacher” and is as false as they come. She loves creating competition among her students, and so she carefully returns assignments one by one from the worst to the best grade, so she can humiliate the same people every time. She finds a scapegoat for her middle-aged frustrations in a little Russian boy with some behavioral issues, constantly ridiculing, insulting and marginalizing him. And of course, a class of eleven-year-olds is the perfect environment for this, as they are uncritical enough to go along with her. She exudes bitchiness from every pore: you can almost smell it, like rancid butter that should be thrown in the trash.

Post script: None of the above teachers is actually any good at their job: they’re too disorganized, too boring, too fearful or too jaded. What a surprise!

Translation: Marie-Hélène Hayles

Saturday, February 6, 2016

The 10 dorkiest things that happen to wheelchair users

Some people get a sudden, inexplicable mental block when they meet a wheelchair user, even if it’s not the first time. They get confused and complicate things with absurd actions and words, blissfully ignoring the easiest thing to do: to just behave the way they would with anyone else. Faced with the unexpected “ordeal” of meeting someone who gets around on wheels, the cog of stupidity begins to whir, resulting in some truly dorky behavior. Here are ten of the gems that in our experience crop up time and again: ten things no one would ever dream of doing with an able-bodied person.

Despised and dreaded by many wheelchair users, it can come at the most unexpected times – especially if you don’t look your age – and from absolutely anyone. From the little old lady who thinks we’re all angels, to your parents’ friend who only sees you once a year, to the dynamic shop assistant who treats you like a child, to the suit-and-tie businessman who greets everyone else with a shake of the hand and reserves this preferential treatment just for you. No matter if you’re fifteen or twenty-five, this greeting is incredibly popular - along with its close relative, cheek pinching.

It happens from time to time. A family friend comes to visit and asks to be updated on all the news, including new and old partners. But they’re only asking about your brothers and sisters, glossing over the possibility that you too might have some exciting news.
A cousin you don’t see much is getting married and tells your siblings that their partners are, of course, also invited… But she doesn’t say that to you.
A great-aunt asks for all the gossip on your brother’s latest girlfriend, making you complicit in her sly observations. And you play along with her, although all the time you’re thinking “hey, you could ask about MY love life too, you know…”, but no, she’s already moved on to the next topic.
They seem to think that asking a young woman in a wheelchair if she has a boyfriend makes as much sense as asking a five-year-old the same question. Everyone in the room would obviously either start laughing good-naturedly or just be baffled, wouldn’t they?
Of course they would.

At the doctor’s, in shops, at the bank... it can happen virtually anywhere. The scenario is the following, the dynamics are always more or less the same:
Characters: me, any helper or friend pushing my wheelchair, a shop assistant.
Shop assistant (addressing my helper): - Hello!
Me and my helper: - Hello!
Me: - Do you have any floor lamps?
Shop assistant: (a bit confused by hearing my voice; he was expecting my helper to speak, but she keeps silent): - Sorry?
Me: - Do you have any floor lamps?
Shop assistant: (still slightly stunned, addressing my helper): - Do you mean a tall lamp or a bedside lamp?
Me: - A tall lamp. Something to light up the room as much as possible.
Shop assistant (to my helper): - Yes, please come over here, I will show you something (followed by a bewildered look towards me. He is starting to wonder if he should be talking to me. And amazingly, he does): - How many Watts?
Me (happy and satisfied): - 100 Watts.
Shop assistant (to my helper again. Talking to her is so much easier - you must understand, he’s already made quite an effort): - Is this OK?
Me: - Yes, please, but I prefer it in gray.
Shop assistant (who’s starting to feel vaguely annoyed because my helper won’t answer his questions): - It’s 20 euros.
Me: - Alright, I'll take it.
My helper pays at the desk. Everyone says goodbye.
EXIT me and helper
To be fair, a scenario only really plays out to this extreme with the very old or the very ignorant. I suppose there can’t have been many wheelchair users going shopping in the first half of the 20th century.

Closely related to number 3 (which is sometimes its natural consequence), this never fails to provide abundant comic fodder. It pops up when you least expect it: in the form of nosy pensioners, shop assistants (see above) and lobotomized teachers. While they may be unsurprised that you can make yourselves understood, they’re somehow stunned that you can actually talk sensibly, intelligently and articulately. Some even remain speechless.

I don’t expect everyone to get down to my level, but sometimes people just don’t realize that during long discussions it would be polite to bend down a little so I don’t have to lean back at a neck-breaking angle all the time.
Even just making sure they’re within the eye-line of the person they’re talking to would be a good start. Many a time I find myself talking to people while staring at their belly rather than looking them in the face. (Although this is at least preferable to talking to the crotch of someone who is particularly tall, especially when they move closer to talk with my helper! It really isn’t the greatest experience: I’m forced to choose between staring at my knees or casually looking elsewhere.)

The idea that the disabled are in a sexual class of their own - or if they’re not, that they would like to be - has apparently taken firm root. People think we are only interested in other disabled people.
This idea pops up every now and then. An assistant of mine once encouraged me to get to know a girl in a wheelchair who lived in the same university halls as me, and told me seriously that we could even “become friends”. That same assistant also gave me knowing gestures and winks about a guy in a wheelchair sitting at a table in the library. Clearly this person wasn’t exactly the ideal assistant, and I am talking about an extreme case, but there’s no doubt it reflects a very widespread general idea: that wheelchair users will always look for others like them and will find other people in wheelchairs irresistibly attractive. Sometimes I wonder if people think we have our very own sexual orientation.

Another widespread idea is that the average disabled person has few – or no –  commitments during the day, that we are almost always at home and that we don’t have anything to do. So there’s no need for visitors to call ahead. 
As a disabled person, I have noticed that more superficial acquaintances, distant relatives and people making courtesy visits while on holiday in the area often decide to drop by without calling first, inevitably messing up my plans for the day.  And something tells me that this happens less often to the able-bodied.
You finally got a morning all to yourself so you can sort through that mountain of paperwork that’s threatening to bury you? Bad luck: you missed your phone pinging half hour ago with a text from Giovanna: “Hi there, I’ll be dropping by in a while to say hello!”
You decided to use your first free afternoon after the summer exam session to watch that film you’ve been looking forward to for the last month? Exactly ten minutes after it starts, someone knocks at the door. Naturally, you can forget the usual “apologies” that you’d normally receive from unexpected guests.
I know that in some countries where hospitality is sacred, the idea of a guest calling before coming round is not even contemplated. And sometimes I find myself admiring this approach, which our selfish, productivity-focused society has forgotten. But the fact is, I live in this society, so it’s natural for me to expect a certain kind of behavior. However, apparently the same rules don’t always apply to the disabled.
I know that we aren’t the only ones who get surprise visits, and that everyone has to put up with an unwanted guest on occasion. So sometimes I wonder if I’m intolerant, a misanthropist or just plain paranoid. But unfortunately, a recent event confirmed that there is a basic cultural problem and my intolerance is absolutely justified. A relative inviting himself to visit us during the Christmas holidays came out with: “After all, you’re always at home anyway, aren’t you?”

When I go shopping, sales assistants often greet me with the same forced cheerfulness and jaw-breaking smiles they normally reserve for four-year-olds out shopping with their mom. This wouldn’t actually be so different from the normal attitude of most shop assistants, if it wasn't that they also use that unmistakable singsong lilt reserved for kids (which I’m actually slightly allergic to in any case). My appearance probably doesn’t help: a twenty-three-year-old who barely looks twenty. Maybe this only happens to young wheelchair users (can any middle-aged man confirm or disprove this theory?). The point is that a good half of shop assistants and civil servants, plus a few random strangers, tend to address me with an affectionate familiarity similar to that of the head-patters (see point 1).

This one can also be found in the superficial Internet etiquette guides on how to behave with people with disabilities. Although I don't agree with one of the most commonly repeated points (I don’t consider my wheelchair as an extension of my body, but rather as a comfortable chair with wheels), I agree with the principle that it’s rude to touch a stranger's wheelchair without a good reason. (For clarity, I am not talking about friends or acquaintances here.)
I don’t know why, but older people especially often lean against my wheelchair while they’re struggling to extricate themselves from a crowd, such as when leaving church. There are two problems here:
1) My manual wheelchair is very lightweight, and if someone leans against it with all their weight I risk being overturned. This has actually already happened, and every time I feel a heavy touch on my wheelchair’s handles I basically lose a year of my life.
2) I wonder whether people would lean as thoughtlessly on a stranger’s shoulders? Because that’s exactly how it feels to me. (So maybe to some extent I do consider it an extension of my body after all... :) )

Sometimes it seems as if being in a wheelchair makes people think you’ve somehow lost your capacity for self-determination. So they start to treat you like a “parcel”; for example, when my mother is accompanying me to the dentist, it’s not unusual for one of her acquaintances to ask: “Are you taking her for a walk?”
If someone else has to push your wheelchair, for some obscure reason all of a sudden you’re more passive than a rag doll.

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