PA’s: The final piece of the puzzle

Hello!

It’s been a long time since I’ve written a blog, and it’s safe to say a lot has happened for me in that time.  A lot has changed, some things have come to an end and new things have started.  So I’ve been pretty busy, and life is still moving forward, but one thing hasn’t changed – I still love writing and speaking about life as a disabled person, and tonight I feel like sharing some of that with you.

18 months ago I moved back in with my parents in Cheltenham, having said goodbye to the city I’d called home for six years, Bristol.  I hadn’t planned to stay at home for long, wanting to move out pretty quickly and have my own space again.  18 months on, though, I’m still here.  I am now looking for my own place, but that’s a subject for another time…

In Bristol, where I went to university at 18, I employed my first PA, and in the years that followed I employed many more PA’s.  I finally got to know what it was like to be completely self-sufficient and in control of every aspect of my day-to-day life, from how people washed my hair to how and when I exercised each week to how my food was cooked.  Having a PA became an essential part of my life because they became part of me, enabling me to do many things others could do without support from another person.

They were like the final piece of the jigsaw puzzle.  Imagine what it feels like when you finally slot in that last piece, how neatly it fits and how satisfying it is to complete the picture.  That’s how it felt employing PA’s, because the support they provided fitted neatly into the gaps in my everyday life; they assisted me in the way that suited me and how I wanted to live, whether that meant washing my hair after breakfast because that’s how I liked to do things, or leaving a sandwich in the sandwich toaster for me to switch on when I was ready for lunch a few hours later.  They completed the picture, enabling me to live independently and choose my own lifestyle.

Coming home has changed things, though.  Living with my parents means that I can, to some extent, manage without as much PA support as I will need when I’m living on my own, but this comes with its own challenges.

I’m one of those people who falls in the gap in terms of the support I need – I don’t need enough to necessarily always need a PA in the house when I’m with other people, but I need enough that the people I live with would have to go out of their way to help me.  For example, I need help making my breakfast, which someone can do when they do theirs, but what happens when I need it at a different time, or when we’re both going out to work and they don’t have time to help me as well as sort themselves out?

Both of these instances occur regularly in different ways with the various little things I need help with, and it does sometimes make things difficult because I currently have no choice but to rely on them for these things.  This can be slightly annoying for them to have to go out of their way to do something for me and can make me feel like I’m not quite my own person within the household.  I can’t get up and get on with my day because I need to ask someone to do my breakfast.  I can’t have lunch until someone has made it for me, which might mean stopping what they’re doing for a few minutes, and I’m very aware of that every time I ask someone to help me.  They’re still fitting the final jigsaw puzzle in place with whatever they’re doing for me, and it’s roughly the right shape, but it’s from another puzzle so it doesn’t quite fit as comfortably as it should.

Having a PA coming in, though, changes things completely.  For the past year I’ve had a PA coming in twice a week to help me before work and then to drive me to work.  Once again, it feels like they’re completing the puzzle with the right piece because they’re coming in to fill the gaps of what I can’t do and because that’s their role it feels comfortable, it feels right.  For those days I’ve been able to get up and go to work completely independently of my parents, which means that when I do see them there’s no feeling of reliance and I am my own person within the household.  It makes a big difference.

As well as the everyday things I need help with there are other things around the house I can’t do, like hoovering my room or changing my bedsheets.  These things matter too, but because they’re tasks that don’t necessarily fit in with what others are doing on a daily basis I’m far less likely to ask someone to do them.  I haven’t been asking a PA to do these things because they’ve just been coming in before I go to work, when time is limited, but there have been a couple of times in the last year where they’ve been in at a different time of day or for a different reason.  It’s felt so empowering in these instances to be able to ask them to do a few extra things that I wouldn’t otherwise do, or that I’d feel awkward having to ask somebody else to do because it’s an extra task for them.

PA’s are an essential part of my life, and living with my parents doesn’t change that.  They fill the gaps in a way no one else can and in doing so become a part of me because of the way they assist me. Without them I can’t be fully in charge of my day-to-day life in the same way everybody else can.

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Employing PA’s: Being Assertive

There are many things to be discussed around the subject of employing a PA as a disabled person, and the one I want to address today is being assertive.

I have learnt through my experience of employing PA’s that I need to be assertive to make sure that my PA’s are meeting my needs.  I’ve employed many people in the last 5 years, some have been amazing, others have been OK and others have not been so good.  It’s when you’re not happy with the way someone is working for you, for whatever reason, that being assertive becomes really important.

I employ PA’s to come into my flat twice a day to do the things that I either can’t do myself or just need a bit of help with.  They are coming into my daily living routine and therefore I’ve always felt that it is very important to employ people who I’m completely comfortable with.  If I’m not completely comfortable then something’s not right.  Think about it, if you’re not disabled you would expect to feel comfortable carrying out your daily routine, so why shouldn’t I just because someone is helping me?

There have been times where I’ve felt uncomfortable with a PA, or where they’ve not been meeting my needs.  A lot of the time it’s the latter because they either can’t or won’t be flexible enough.  Most of the time there’s been something concrete, like they haven’t been able to do the shifts I’ve needed, or haven’t been willing to. In these situations I’ve had to tell them that the employment relationship is no longer working for me and that I have to find somebody else.  This takes a certain amount of assertiveness because it’s not easy, as I’ve found, to be in that position of authority and tell someone that they can no longer work for you.  It has to be done, though, to ensure you’re happy with the PA support you’re receiving and ultimately that you’re running the show rather than fitting around other people.

This, however, is the easier of two options.  There isn’t always a second option, but I’ve recently found myself in a situation where I do have the second option.  Sometimes you might employ a PA who you are not entirely comfortable with and there has been no significant event that has given you cause to end the employment relationship.  What do you do in these circumstances?

I’ve let the situation go on for months, feeling too scared to voice my concerns to my PA.  I wasn’t happy with her attitude towards me as her employer and felt that she didn’t fully understand the role of a PA.  I felt like my independence was being compromised because she was questioning the way I used my PA’s.  The problem was that I didn’t know how to voice my concerns, or if it was even fair to do so.  Instead, I told my parents about the situation and they were able to give an objective view.  This really helps because sometimes, when you’re too involved in the situation yourself, it’s hard to see what the right course of action is to take.  My parents could see that my working relationship with my PA wasn’t right and needed to change significantly if it was going to continue.  This gave me the courage to step up, be assertive and deal with the situation.

I could still have ended the employment relationship and just said that it wasn’t working out, but I decided not to.  As an employer I have a responsibility to be fair to my employees and give them a chance.  I decided to explain my concerns to my PA, make it clear what isn’t working and why things need to change.  I’ve said that if things do change I am still happy to employ her and will review the situation in six weeks but that if she feels that she can’t work in the way I need her to I’ll have to find somebody else.  I don’t mean this in a harsh manner, I mean it in a kind manner.  Stating that I will review the situation in a set amount of time also formalises the relationship a bit.  This can help when things aren’t quite right because it makes it clear to your PA that if you don’t see a change you will need to end the relationship.

Rather than having the attitude ‘you’re not doing what I want so I don’t want you to work for me anymore’ I’ve clearly stated how I need the employment relationship to work and understand that if she is unable to work like this then it needs to end for both our sakes. That’s far harder than just ending it immediately.

I made sure that I took time out to figure out how I felt about the whole situation before voicing my concerns.  This meant that I could be completely open and honest with my PA, not from a place of anger and resentment but from a place where I could feel that what I was doing was the right thing for both of us.  Whatever response I get now I’m confident that I dealt with the situation in the best and most appropriate way.

It is always important to speak up when you feel that your PA is not meeting your needs, either physically or emotionally through making you feel uncomfortable.  Before you do, though, think about what it is you’re not happy about and why you’re not happy about it.  Then, without getting angry or confrontational, clearly state how you feel and what you need to change.  This is how you can become far more assertive and create far healthier relationships with your PA’s.   It’s not about whether you think that person is good, or mean, or doesn’t care enough.  It all boils down to whether they are the right person to be YOUR PA.  When you feel that somebody isn’t right for you, you can then say with integrity that it’s not working for you and that either something needs to change or unfortunately you will have to let them go.

Inspiration: The fine line

Inspiration.  That word many disabled people don’t want to hear.

”Oh, you’re such an inspiration” we hear many people say.  For what?  Leaving the house?  Being out on our own?  Before I go any further, I just want to say that I DON’T always think that saying a disabled person is inspirational is a bad thing, so let me explain how I see it.

Yes, there have been many times where it has felt excruciatingly patronising when someone has said these words or similar to me, to the point where I’m dying to respond with something that’ll make them think, make them see that I’m no different to anybody else.  Some disabled people hate the term ‘inspirational’ altogether and to a point I do agree.

It can be very frustrating when someone just thinks you’re such an amaaaazing person when you’re doing no more than getting on with your life.  It makes us feel like people are setting us apart from the rest, like they’re using a much smaller measuring stick to gauge how successful we are in life compared to somebody who isn’t disabled.  Maybe even like we’re less of a person because if doing everyday things that everyone else does is inspirational then what have we to aspire to if we have already surpassed people’s expectations?

That said, I think there are plenty of times when it is genuinely meant as a compliment.  Maybe not even that, perhaps they are just in awe and are trying to express that with no intention of suggesting we are ‘less’ in any way.  If we make a fuss every time someone gives us a compliment we will only scare people into not saying anything for fear of getting it wrong!  Then how would we feel?

People have complimented me on my speaking progress in Toastmasters and have in some cases related it to my disability (see my first and second blogs about my experience at Toastmasters) and I don’t consider that to be patronising.  Let’s be honest, how many wobbly people to you see speaking in front of others by choice when they also have a speech impairment?  No, I don’t consider it patronising because I think it is a sign of genuine respect for what I’m doing and I appreciate the compliment.

Someone pointed out to me just last week that complimenting disabled people and saying we’re ‘inspirational’ may also be an expression of a lack of belief in themselves.  People may simply be thinking something along the lines of ‘how on earth do they do that?!  I couldn’t/wouldn’t possibly do that if I was disabled!’  I hadn’t seen it from this angle before, but I think it makes sense.  It’s the same as being inspired by, say, a trapeze artist.  Let’s face it, disability or not, most people are pretty impressed by what a trapeze artist can do because we can’t see ourselves being able to do that in a million years!

I hope, though, that times are changing.  Accessibility and disability awareness are improving all the time, which will mean that gradually seeing disabled people taking an active part in society, going to the gym, doing an adventure sport or driving a car (as long as you can see, please!) will become the norm.  Maybe it will increase people’s self-belief so that these things aren’t seen as inspirational because people can see themselves doing exactly the same thing if they were in our situation.