Disability and Exercise

Exercise.  Something I’ve never realised the importance of, for me, more than I have in the last few weeks and months.

I’m a bit wobbly on my feet, so although I walk around at home I use an electric wheelchair most of the time when I’m out and about.  When I’ve reached a destination I’ll often get out of my chair to move around a bit, but I do tend to rest my hands on things as I pass for balance.

A couple of weeks ago I fell over.  At home, in a familiar environment, quite unexpectedly.  I do lose my balance sometimes – actually, probably quite often without realising it now I come to think of it.  I say ‘without realising it’ because I normally save myself pretty quickly before I’ve even thought about it.  But this time I didn’t, and I couldn’t regain my balance the way I normally can even if there’s nothing around to grab.  So over I went.

A little surprised, as this hadn’t happened in years, things started to add up in my head.  I’d nearly lost my balance on a number of occasions in the previous 3/4 weeks but hadn’t paid attention to it until now.  Why was I so wobbly?  I hadn’t been like this for years.  Since…

Oh, right, yes.  Since I started rock climbing five years ago.

And I’ve not climbed now for about six months.  I’ve been cycling, which has kept me fit and healthy, but I’ve hardly been doing even that for the last two months.

I didn’t do much exercise before I went to university, or in my first two years there.  So when I started climbing in my third year I saw massive improvements in my fitness and my balance.  It was my housemate who told me I was far more stable, and that’s because climbing works everything (or at least it feels like it does!) and my core strength suddenly improved significantly.  I still held onto people when I walked any distance, but I was much less ‘all over the place’ than I think I’d ever been.

Climbing is so much fun, too.  I love a challenge, and climbing provides that every time I go.  That’s why I did it, because I enjoyed it, and I will go back to it at some point.  The only reason I’ve stopped is because I don’t have a PA who can rock climb at the moment.

Last year I started cycling too, and saw significant improvements again.  I’d only been cycling a couple of months when I went on holiday in Cornwall and walked along the beach, right down at the edge of the sea.  I was holding onto my mum, but I was barely leaning on her as I was keeping my own balance surprisingly well.

This was new.  I’ve been on many family holidays down in Cornwall, a place that provides plenty of challenging terrain to walk over, and have always had to lean quite heavily on one if not two people to manage this (rock pooling as a child springs to mind.  I told you I like a challenge…).  Last year, though, I was keeping myself very steady as I waded along, feet in the sea, my mum providing some stability but not needing to do too much more than that most of the time.

Cycling had definitely made another significant difference to my core strength and balance.  One I really hadn’t expected.  I use a couple of different trikes, one that has foot pedals and another that is a hand cycle:

Jennie on hand cycle.jpg

Surprisingly, my favourite is the hand cycle!  The first time I used it I thought there was no way, no way whatsoever, I would get around a 400m athletics track.  Now?  On a good day I’ve done 16 laps, so 4 miles.  It’s great for my whole upper body, and as I use both bikes in any one session everything has a workout when I go cycling!

I really enjoy cycling, too.  I enjoy being able to exercise, being outside and feeling my body working.  I also like going fast, so I don’t go easy on myself!

But the last few weeks I’ve let it slip, I haven’t put it in my diary so it hasn’t happened.  I couldn’t go for various reasons in December, and I haven’t got back into the habit.  If I do cycle, though, I need to think about my day around it.  I could work in the morning and cycle in the afternoon, but I might not then go out in the evening, depending what I’d be going out for and how I’m feeling.  If I’m not careful I can be exhausted the next day.  Exercising takes a lot of energy, so I need to rest afterwards.

I didn’t fully appreciate how important exercise is for me until I stopped and saw how much it affects my balance, how much more wobbly I am if I don’t!  Exercise is important for everyone, and I think for people with mobility difficulties it is particularly important to make sure you keep as mobile as possible.  In my case, using a wheelchair means I use my muscles much less than everybody else does, so I need to be conscious of making sure I do exercise to maintain as much mobility as I can.

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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.

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.

Getting Stuck Into Toastmasters

I told you in my last blog how I got involved with Toastmasters, but that was only the beginning of the story…

After attending a few meetings I joined and eventually plucked up the courage to do my first speech. In Toastmasters you work through manuals, each of which has a set of projects to complete to write and deliver a speech. These projects help you work on different public speaking skills in a step-by-step manner.

The first speech is about introducing yourself. As I started to plan it I wasn’t sure what I wanted to say about myself. How do you figure out how to explain who you are in five minutes? You either have a mental block and can’t think of anything to say about yourself or you realise there is just too much you could talk about. I wrote down a few words that I felt summed up who I am and what I’m interested in (yes, for those of you who are wondering I did write down chocolate). When trying to link these things together to form a speech that wasn’t all over the place with too many different topics I realised that two words stood out from the rest: disability and determination. So I started writing my speech about how my disability has never stopped me from doing anything I want to do.

Before I knew it, it was time to deliver my speech and I was nervously excited. I had practised it a few times so was confident with the content and being within the time limit (it’s amazing how much you can cut out without losing any content when you practise it a few times and realise how much isn’t needed) but I was still nervous about actually going up and speaking, especially as not many of the people there had heard me speak before because there were only a few people at my first meeting. Excitement, however, was not a feeling I had previously associated with public speaking. I’d been up in front of classmates a number of times during my degree and had been terrified by the thought of having to deliver a presentation to them. 

I can’t tell you now exactly why I was excited about giving my first official speech – maybe it was because I was talking about something that I was passionate about, or because I was delivering it to a group of people who were only there to support me and therefore there was no pressure. I realised how good this lack of pressure felt the night before – for once, I wasn’t being tested or marked on how well I did. At the end of the day it didn’t matter if I missed something out or if I somehow messed up during my speech. The whole point of Toastmasters is to provide a safe space where you can work on your public speaking skills, so if my first speech went slightly wrong I could do better next time.

I walked to the front, sat down clutching my iPad and began to speak. As I got into it I became more relaxed, although I still looked at my notes regularly, more as an excuse to not look at the audience than because I couldn’t remember what to say next. I soon came to the end and felt good about what I’d done. I was eager to hear my evaluation – how had I come across? Had I been understood? Had people enjoyed it? I needn’t have worried, though. While my evaluator hadn’t understood every single word he had still understood the vast majority of what I’d said and therefore my message had come across clearly. Other people came up to me during the break to say how much they’d enjoyed it too.

For the second time I won best speaker and went home with more confidence in myself than I’d had in a long time. I had managed to deliver a speech on something I was passionate about and felt held a message for others that people had understood and enjoyed. My speech had reminded one of the guests that night of a motivational speaker called Nick Vujicic who he had seen on TED. He has no arms and no legs but, like me, does not see his disability as a barrier. I looked him up a couple of weeks later (I strongly suggest you type his name into YouTube too!) and was inspired by what he had achieved and by his message to others to live a life without limits as he has done. It was at this point that I began to realise that public speaking could be more than just a hobby for me, it could be part of my career.

Venturing into the world of public speaking

As some of you may know, I’ve been wanting to start writing my own blog for a while, so here it is!  The catalyst for me doing this now is probably Toastmasters, a public speaking club I’ve recently joined which has given me the space and confidence to speak about things I’m passionate about.

Toastmasters is a fantastic organisation that has clubs all over the world where people can improve their public speaking skills. Anyone can join regardless of their skills and confidence in public speaking – if you have the desire to improve you are welcomed with open arms. This is what I loved after going to my first meeting, and what’s more there was no pressure to speak or to join. I could even have been a guest for as long as I wanted.

I surprised myself at my first meeting back in November, which was different to the normal format as everyone had five minutes to prepare a speech and then those who wanted to could deliver it (normally people prepare speeches beforehand). As I wrote mine I wasn’t quite sure whether I wanted to go up to the front or not. When five minutes were up everyone gave their speeches and each time a speech ended I almost volunteered to speak next but waited long enough to see if anybody else would first.

Eventually, I was the only one who hadn’t spoken. If I wanted to speak this was my chance. So I stuck my hand up before I could stop myself! Now I had to deliver. As I started my speech, giving a brief insight into my life, I realised I had plenty to talk about (something my family realised a long time ago!) but in the back of my mind I was very aware of how I sounded to other people. Although I have a speech impairment I can’t hear it myself but I become far more aware of it when I’m consciously trying to speak as clearly as possible.

Suddenly, I realised I’d been speaking for over five minutes. I couldn’t believe I’d been able to find enough to talk about for that length of time. In Toastmasters every speech is evaluated and I was surprised to find that when it came to my evaluation I had come across as calm and confident. Even more surprising to me was that I had definitely been understood well enough for the evaluator to comment on the content of my speech.

At the end of the night, as in every Toastmasters meeting, there was a vote for best speaker. This was a night full of surprises for me as my name and the words ‘best speaker’ were then announced in the same sentence. I went to the front for the second time that night to receive a ribbon. I was slightly worried at first that I’d got the sympathy vote and that people were unintentionally being patronising towards me because of my physical disability and speech impairment. However, I realised that people didn’t have to vote for me and therefore felt that their votes were genuine.

I went home with a great sense of achievement and feeling very enthusiastic. I realised that there was nothing stopping me from joining Toastmasters and exploring the possibilities of public speaking for me.