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

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