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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Identifying with a speech impairment

I recently took part in a Toastmasters speech contest, and preparing for it really got me thinking about my speech impairment.  For those of you who haven’t seen my earlier blogs, Toastmasters is a global organisation with local public speaking clubs all over the world.

Every year Toastmasters has an International Speech Contest, and this is the first year I’ve been eligible to compete.  I won the club contest, which put me through to the area contest with speakers from four other clubs, where I came third.

I used a speech I’d already delivered, so I could work on improving the finer points rather than starting from scratch.  This meant I could really focus on the clarity of my speech.  People at Toastmasters have commented on how much clearer I’ve become as a speaker over the last couple of years, so I wanted to see how much more I could improve that if I really put some work into it.

The first time I’d delivered this speech it had been videoed, so I watched it back and listened carefully to the clarity of it.  I was immediately able to identify a few points where words weren’t so clear so that I could put a little extra effort into those parts.  Then I got into the nitty gritty.

As I worked on my speech content, changing bits slightly to make it better, I recorded it in sections and listened back to it, identifying all the points where I wasn’t so clear.  Finding these points meant that I could try out different ways of saying something, and consciously saying those parts more clearly transformed the speech.

It was fascinating learning how my speech really worked.  It was also completely new that I wanted to pay proper attention to it.

It’s been a very long time since I’ve thought at all about the clarity of my speech.  I had speech therapy as a child, which I enjoyed when I was at junior school.  I think the pictures helped to be honest.  They made it fun and engaging.  You see, speech therapy for me was about concentrating on certain sounds.  So I would repeat words (represented by said pictures) with those sounds in them.  I was given sentences to say as well, some of which I even made up with my speech therapist or teaching assistant, which made the whole thing a lot more engaging.

Then I hit secondary school.  Different story altogether.

I had no speech therapist anymore, and no time in the school week to do my speech exercises.  So it fell by the wayside, and I forgot all about it.

Until a speech therapist was brought into school, probably when I was in Year 8.  Gone were the pictures, gone were the sentences.  But that was OK, I wasn’t a child anymore.

I wasn’t, a child, anymore.

The speech therapist gave me sheets of words that had certain sounds in them like ‘sh’ and ‘ch’.  I was given these exercises to do at home, to read out these lists of words in front of a mirror.

I was a teenager.  Did I do them?  No.

I was far too embarrassed!  I didn’t want my family to hear me doing these silly exercises!  What’s more, I couldn’t see the point in doing them.  They were never going to make a difference in how I spoke.  As far as I was concerned I spoke the way I spoke and nothing was going to change that.

There was something deeper, though.  I knew I was disabled, that I couldn’t do everything my peers could do physically.  My speech was a different matter though.   You see, I can’t hear my impairment when I speak; I sound as clear to me as everyone else does.  So being told as a teenager, when suddenly everyone cares about being ‘normal’ and fitting in, that I had to do these speech exercises forced me to acknowledge that I had a speech impairment.  And I didn’t want to.  I think it was the only part of my disability that I didn’t want to identify with.   At all.

So this is the first time I’ve ever really wanted to work on my speech.  It’s become crucial for me to work on it because I want to be a professional speaker.  I can’t do that if I can’t be understood.

Toastmasters has really helped me accept that I have a speech impairment.  The whole ethos of the clubs, to help people on their personal journeys to becoming better speakers, has meant that I’ve felt fully supported on my journey.  People have been genuinely interested in what I have to say, and have given me valuable feedback.  They haven’t just given me a pat on the head, or been afraid to give me points for improvement, but instead have picked up on things that help me to become the best speaker that I can be by using my voice and speech in the best way possible.

I’m not embarrassed about having a speech impairment anymore, I’m happy to work with it.

#EndTheAwkward #1: Do You Know How Old You Are?

Scope have set up a campaign this year called End the Awkward.  The aim?  To put an end to all the awkward moments that occur every single day between able-bodied and disabled people, where the person who doesn’t have a disability just doesn’t know how to act and as a result says or does some very awkward things.

With this in mind I have decided to do a series of posts in which I’ll give you an awkward situation I’ve been in and explain what could have been done differently so that all involved feel much more comfortable.

Awkward Situation #1: Do you know how old you are?

Yes, you read that right.  At the age of 13 I was at guide camp when I had the following conversation:

 

Girl 1 (to the person pushing me in my wheelchair): What’s her name?

Person pushing me: Her name’s Jennie

We stop, girls stand around me

Girl 1: Hi Jennie, my name’s Charlene.  Do you know how old you are?

Me: Uh, well, yes… (in a voice that really says ‘why wouldn’t I?!’) I’m 13.  How old are you?

Charlene: I’m 11.  Can you remember my name?

 

However bizarre this might sound, I really did have this conversation!  The whole thing screams awkward, even before I was asked if I knew how old I was.  Asking the disabled person’s companion questions about them, such as their name, is very common.  There are a couple of ways this situation can be turned around to avoid any awkwardness, though, or at least minimise it.  I often immediately answer the question myself, because sometimes I’m not sure if my companion will answer for me or not.  Doing this helps the person asking the question by shifting their attention to me, and encourages them to talk to me directly because I’m showing them I’m capable of speaking for myself.  Don’t forget, while they may not be acting in the most appropriate way, they probably do mean well, so you really can help them out in a positive way without being rude here.

The companion can also help stop an awkward moment from unravelling simply by suggesting that they ask the disabled person themselves.  In this situation, this encouragement may have helped Charlene to feel more comfortable talking to me after receiving confirmation that she actually could!  This might also help to break down the perception that I don’t know anything!

If one of these simple solutions had been used in the situation above I may well not have been asked if I knew how old I was, but instead just how old I was.  If, however, a question like this is asked in other situations I think I would simply answer the question and try to continue a conversation with the other person.  This gives me a chance to talk to them more on a level, so I can make it clear to them that they don’t need to talk down to me and that I have plenty to say for myself!

So that’s how I would deal with awkward moments like this.  If you’ve been in a similar situation and/or have other suggestions please feel free to leave a comment below!

Why we need toys with disabilities

For those of you who don’t already know, Toy Like me is a campaign that was started earlier this year by three mums who had children with different disabilities.  The purpose was to campaign for big toy companies, such as Mattel, Playmobil and Lego, to start making toys with disabilities.  One with a walking stick, another in a wheelchair and another with a guide dog, for example.  Really, it’s the next step from introducing an autistic character on an online Sesame Street storybook.

When I was growing up these toys were nowhere to be found, and until I’d heard of this campaign I hadn’t given this much thought.  Why?  Because children take toys for granted.  They don’t question such things as whether they’re truly representative of what goes on in reality!

And that’s the problem.

Children grow up playing with plenty of toys and unknowingly learn about the world as they do.  They learn that trains run on tracks, that firemen drive fire engines and that Barbie and Ken are the perfect image of a man and woman…

Wait…what?  Every girl should grow up to look like Barbie and every boy should grow up to look like Ken?

I know.  Ridiculous, right?

Yet these are the kinds of images children are receiving through toys that are influencing their understanding of the world.

So the solution is to make the toy box more representative, and this is exactly what Toy Like Me are trying to do.

Until now, representations of disability in toys have focused on old people in wheelchairs and a boy with a broken leg.  In hospital.  So children are growing up with toys that are very unrepresentative of disability.  This means that they don’t see disability as normal, as part of life, because the vast majority of disabilities aren’t represented in the toy box.  Is it any wonder they grow up not knowing how to interact with a disabled person and seeing them as different to everybody else?

Children are learning about the world at a fast rate.  When they’re young they have no judgement on what they learn because they don’t have anything to compare it to.  What they see and hear is just how the world is, and they don’t have any problem with it.

It’s when they grow into teenagers that the judgments start to appear, when they start comparing what they see now with what they’ve already learnt about the world.  If this is the first time they encounter a disabled person can they really be blamed for not knowing what that means, for seeing them as different and not knowing how to interact with them?

What about disabled children?  If they don’t see any toys with disabilities in the toy box how are they supposed to learn how they fit into the world when the message inherent in the lack of toys with disabilities is that they don’t?  This is at the core of the Toy Like Me campaign, that disabled children should have toys they can identify with, toys they want to be like when they grow up.  Is it such a stretch to have a Barbie in a wheelchair or a doll with a cochlear implant so that disabled children have this?

Would having toys with disabilities have made a difference to me when I was younger?  Yes.  For one thing, I might not have felt so different at school if I’d grown up seeing disability as part of the norm.  For another, other kids might not have been so unsure of me if, again, they’d grown up seeing disability as part of the norm.

I think that while having toys with disabilities in the toy box is the way forward it needs to be approached in the right way.  Playmobil have the right idea.  The only big toy company to respond to the campaign so far, they have announced plans for a new set of characters that includes disabled characters.  I hope, as this suggests, that disabled characters will be part of a set including other, able-bodied characters.  This is the key to teaching young children that disabled people are part of society and are not separate.  It also avoids the obvious outcome where only parents of disabled children buy toys with disabilities, defeating one of the main purposes of introducing them!

Toy Like Me are still waiting for the other big players in the toy industry – Lego, Mattel and Hasbro – to follow suit.  To find out what they’re up to and keep up with their progress like them on Facebook or follow them on Twitter!

How Disabled Pupils Can Take Design & Technology Subjects

A few weeks ago I wrote about the importance of encouraging disabled pupils to take Art as a school subject if they wish to do so.  I now want to talk about another group of school subjects that involve a very physical element that should also be made available to disabled pupils: Design & Technology.  D&T covers a range of subjects such as product design, food and nutrition and textiles.

Everyone at my school had to take a D&T subject for GCSE; everyone, that is, except me.  It was felt that because I wouldn’t be able to do much of the physical side of things myself it wouldn’t be my own work and therefore there’d be no point.

At the time I agreed, but having since been to college, university and now living independently I’m not so sure of this view.

D&T does heavily rely on physical input, much of which I may not have been able to do myself, but could I have taken a slightly different approach so that the work was still my own?

I think the answer to that is yes, and here’s how.  Since leaving school I’ve learnt a very valuable skill: how to direct people (remember my blog about what it means to be independent?).  In the 8 years since I left school I’ve learnt to direct people in many areas of my life to do things for me, in exactly the way I want them done.  I do this on a daily basis with my PA’s, I’ve sat numerous exams that have involved dictating mathematical equations in great detail (and I did A Level Maths and an Economics degree, so the maths could be quite advanced) and I even use this skill when I’m out socially and need a hand with something specific.

How does this relate to D&T?  Simple.  If a disabled student can’t physically complete the task themselves, as long as they have the knowledge of how to do it they should be able to direct a support worker to do it for them, just as I directed scribes by dictation in maths exams.  This isn’t, and shouldn’t be, as easy as it sounds.  Directing someone to do a technical task such as those involved in D&T requires a high level of skill because very precise directions need to be given, including instructions for things you may just do automatically if you’re doing it yourself.  The person physically doing the task, therefore, should just be considered the pupil’s hands and should not be contributing their own thoughts on how the task should be completed.  This way they are not influencing the outcome in any way with what they think they should be doing.  If it goes wrong (as long as it doesn’t start a fire) then that’s OK, because it’s the pupil’s responsibility to give precise instructions as to how the task should be carried out, and this is how they can learn.

The key to D&T, just like anything else, is the mind.  If a disabled pupil has the intellectual ability to create something, to understand how elements need to come together for it to work, and most importantly to direct somebody else as to exactly how they want every task executed then it is still their creation and can therefore still be assessed as their own work.

Imagine someone like Stephen Hawking, a scientist who has the potential to envision the most advanced invention of our time but can’t physically bring it into being himself.  Should he not take D&T, not learn how things work, and therefore never gain the knowledge that could spark the idea for that invention?

Or should he be encouraged to take D&T and learn to direct a support worker to do the physical elements for him, exactly as he instructed?

School is about pupils developing their individual skills and exploring what they’re capable of.  That goes for disabled pupils too.  If they have a disability that limits their physical ability to complete certain elements of a D&T subject they can develop an equally valuable skill, one they will most likely rely on in the future, by learning how to direct others.

Sesame Street introduces character with autism, and it’s a massive step forward for children’s TV

For those of you who aren’t aware, last week Sesame Street introduced an autistic character, Julia, in a new online storybook along with current characters Elmo and Abby.There have been mixed feelings about this introduction.

When I first heard about this I thought it was fantastic. Disability is so rarely even included in the media that there is a danger that people can just ‘forget’ that it exists because whenever they’re watching TV shows, especially soaps about people going about their daily lives, disabled people just aren’t there. So when they do meet a disabled person they don’t know what to do or how to act around them because disability is a bit of an ‘unknown entity’. Remember my last blog about disability and identity? I discussed how society generally holds a negative image of disabled people as less able, different, maybe even like there’s something ‘wrong’ with us.

Sesame Street is challenging that image, and I think this is exactly the sort of thing we need to be doing to start changing perceptions around disability. Including an autistic character in the first place makes children aware that there are people with autism and helps them to start to understand it. Negative perceptions of disability only arise from a lack of understanding, so increasing understanding should have the opposite effect.

To explain the storybook briefly, Julia is introduced as Elmo’s friend, who he has played with since they were ‘really little’. Elmo introduces her to his other friend, Abby, and the three of them play together. However, Elmo has to explain at various points why Julia ‘does things a little differently’, like flapping her hands when she’s excited or covering her ears when she hears a noise she doesn’t like.

The storybook is aimed at a very young age group, 2-5yrs, which is a great age to start educating about disability. Autism is an invisible disability and no two people with autism are the same. It is what I would call a social disability as well as, often, an intellectual one. All of this means that autism can be very hard to understand, yet Sesame Street have managed to explain some of the common characteristics in a way that young children can easily understand and, more importantly, accept. What’s more, children are curious about everything because they’re learning so much about the world around them, so they’re likely to be highly receptive to it and therefore more likely to understand it/take it in. They’re not yet old enough to be influenced by society’s negative image, so if they understand a bit about autism at this age they’ll grow up accepting it and are therefore much less likely to form negative perceptions around it.

As children grow older their perceptions of disability will be largely affected by society’s perceptions, which creates the danger that the cycle will continue if we do nothing; as these children become adults who take society forward the negative perceptions around disability will continue to stick. However, if children are educated from a young age about disability this should go some way to changing those perceptions for the better, and should eventually spread through society.

While the majority of what I’ve read about the introduction of Julia has been positive or at least neutral, some are of the opinion that it is creating a negative stereotype. As I said before, no two people with autism are the same so yes, there is the danger that young children will read the storybook about Julia and assume that all autistic children have exactly the same behaviours. But wouldn’t this be the case with any autistic character that is introduced?

The problem isn’t that Julia has some common characteristics of autism that shouldn’t be generalised to all autistic children, the problem is that there aren’t more autistic characters in children’s TV. So at the moment the only frame of reference children have is Julia. Does that mean introducing Julia was a bad idea? I think not. I think it’s just the start. Not every child with autism will do things the way Julia does, so I hope Sesame Street will lead the way for the introduction of other autistic characters with a range of characteristics so that children understand that not all autistic children are the same. For now, though, we have Julia, and at least that’s a start in showing children how people with autism might behave so they can start to build an understanding of it. The other option? Sweep autism under the rug until children are ‘old enough to understand’, by which time they will have started buying into the negative image of disability prevalent in society today.

Until more characters with autism are introduced in children’s TV Julia will be a significant frame of reference for many, but perhaps, with guidance from parents, the emphasis shouldn’t be on Julia’s specific behaviours but instead on the fact that she does things a bit differently and that’s OK.

Disability and Identity During the Turbulent Teenage Years

I’ve been doing a bit of reading lately that’s really got me thinking about one of the core issues around disability: how do people feel about identifying as disabled and if they don’t like to identify, why not?

I can comfortably say that I do identify as disabled.  Now.  But what about when I was at school?

I gave this question some thought, because I did have a lot of negative feelings around my disability as a young teenager in secondary school and from my reading it would seem that a lot of people didn’t want to identify as disabled during those turbulent teenage years.

I came to the conclusion that yes, I did identify as disabled, at least for most of my secondary school life. Now, you may be thinking this is a really good thing that I accepted my disability; that I didn’t feel the need to separate myself from it or pretend it wasn’t there.  You’re probably right.

But on the flip side, what is society’s view of disabled people?  Clue: it’s in the word!  Everywhere you look disabled people are portrayed as less able, different, like there’s something ‘wrong’ with us.  We’re often viewed with pity for being given the life situation we have.

So while I identified as disabled, I only saw the negative side of that.  I identified with society’s view of disability.  I saw how I was different, less capable physically, and this made me feel very separate to my peers.  Feeling different extended to feeling like my ideas, views and opinions would be laughed at and ridiculed by others if I shared them, so instead I kept quiet. I built a wall around myself so that no one could get in.  It was necessary, I thought, to protect myself.

What about now?  I still identify as disabled, perhaps much more readily than I did at school, but the negative side has steadily shrunk over the last few years.  Where I used to feel different and less capable I now know that’s not true.  I identify as disabled because there are simply things I physically cannot do the way others can, but that doesn’t stop me doing them.  I find another way, adapt how it’s done to suit me, or direct somebody else to do it for me.  I say direct because I know how I want things done, I just need to communicate that clearly to somebody else, so that effectively they are just my hands.  This means I’m not less capable of doing most things, I just might need to do them a different way.   I’ve grown much more comfortable asking for help, because doing so doesn’t make me feel less able, it actually feels really empowering.  I identify as disabled because my disability is part of who I am, and I’m happy with that.

I went through periods at school and college of wanting to focus on disability and then wanting to do the opposite.  For example, at one point in my early teens I thought I wanted to work for the council in whatever department dealt with issues regarding disabled people because I had the experience.  Then I decided I didn’t want to do that because I didn’t want to work in the field of disability just because I was disabled.  I began to feel like that would be a bit of a cop-out.  Essentially, although I couldn’t put words to it until years later, I didn’t want to be defined by my disability; I wanted people to see that there was more to me than that.

Now that I have a much more positive view of myself as a disabled person I see my disability as an important part of who I am.  Not the only part, though.  I know that my ideas aren’t going to be laughed at, that being interested in certain things doesn’t make me different to other people, it’s all part of who I am and if I have a certain view on something, or a particular interest, chances are if I take down that wall and share it I’ll find others who share the same views and interests.

I don’t see working in the field of disability as a cop-out anymore either.  I see it as a strength and as an experience that I can use and share to help others and to change perceptions of disability.  Seeing it as a cop out, or as the easy option, would fit with the view of disabled people as less capable, and now I know that view is wrong.

So I’ve learnt a lot about who I am since leaving school.  I guess that’s true of anyone.  I think, though, that negative perceptions of disability disempower young disabled people in particular.  We need to change perceptions so that they do feel able to identify as disabled if they want to, and don’t see it as a negative aspect of themselves but rather as one of many positive aspects.  The impact this could have on the future of our society?  Massive.

Why disabled pupils should be encouraged to take Art

Today I want to talk about something that I’ve been thinking about for a while that I now want to try to explain, if only in an attempt to refine my thoughts on it.

When choosing my GCSE subjects at school, I was strongly advised against doing Art because it would be too much work for me.  While there was probably a lot of truth in this, it sent out a very different message to me – that I just wasn’t good enough.  That because of my disability I wasn’t capable of creating something with my hands that would be any good.

I will never know how much, or how little, this view contributed to the real reason for me being advised not to do Art, but even if it was a very small contribution perhaps the view that schools have of disabled pupils today needs adjusting.

School should be a place of encouragement, a place to grow and explore one’s capabilities.  Disabled pupils, just like all other pupils, should be encouraged to explore their own capabilities and be given the space to find ways around any physical limitations they may have.

I used to LOVE being creative, and as you’ll see from my previous blog about crochet, I still do.   In my first few years at secondary school I drew many pictures of Disney characters, and had a go at drawing simple cartoons too.  I also loved sewing.

However, I was really embarrassed to admit to these hobbies to anyone at school.  I was disabled, surely they’d think me ridiculous to even THINK I could do anything creative with my hands that would be any good?  I had this image of myself as someone who wasn’t capable of doing anything properly that involved any physical input, and I guess school re-enforced this image by steering me away from taking Art, even though the reason given was that it would be ‘too much work’.

Could I have done Art at GCSE, though?   According to the AQA website, GCSE Art and Design:

‘provides students with a wide range of creative, exciting and stimulating opportunities to explore their interests in ways that are both personally relevant and developmental in nature.’

This description suggests that physical ability doesn’t enter the equation when it comes to studying Art for two reasons.

  1. Disability doesn’t necessarily limit creativity; at most a physical disability may lead a pupil down a different but equally creative path depending on how the disability affects them. Even if the pupil has a disability that affects their hands, they may still be very capable of drawing, painting and creating art through many other mediums.
  2. Disability does not prevent a pupil from developing a project in their own way and basing these projects on something that is relevant to them; in fact, disability could come into their artwork. While my pre-GCSE creations were not up to GCSE standard, through taking Art I could’ve developed my techniques just as any other pupil does.

Due my cerebral palsy I have difficulty with fine motor skills, but that didn’t stop me from drawing this picture two years ago:

Drawing of Jennie & Chris

Discouraging pupils from taking Art could re-enforce a false image they already have of themselves being ‘unable’ to do certain things and therefore not equivalent to their peers.  Is this how we want young disabled people to see themselves as they grow up?

Schools should encourage disabled pupils to explore their own capabilities and, where necessary, to find ways round any limitations they may have.  Removing options isn’t the solution as it only narrows the path they think they can travel.   Let them figure out what they’re capable of; they might just surprise you.

Crochet Fingers

I’ve always liked a challenge, so it’ll be no surprise to many of you that when the opportunity presented itself in May this year to have a go at crochet, I got stuck in!  Like with many things, though, I needed to adapt the process so I could do it more easily, because I just don’t have the dexterity they had when they created crochet.

Before I go into that, though, what is crochet?  That’s the question I asked…after I said I wanted to give it a go.  Say I’ll do it, figure out how to later – that’s how I live.

Anyway, as I was saying, crochet is a handicraft using a single hook and some yarn.  You can crochet a wide range of items, from blankets to soft toys to clothing and much more.  The possibilities seem endless!

Normally you hold the hook in your dominant hand and handle the yarn in your other hand.  Stitches are created by wrapping the yarn around the hook so it can then be pulled through the loop(s) already on the hook.  The hook needs to be twisted during this process.
2. Yarn wrapped round hook 3. Yarn pulled through loop already on hook4. Completed stitch

After a few of the most basic stitch, the chain stitch, it should look something like this…

5. Row of six chain stitches

The first time I picked up a crochet hook I found that I couldn’t hold or twist it very easily because I lack fine motor skills.  The long, thin shape of the hook makes it awkward for me to hold, so to compensate for this I had to grip it very tightly, which caused a lot of tension in my hand and it became painful very quickly.

Such minor obstacles didn’t deter me, though.  I realised I needed to find a way to keep the hook still, and angled up and away from me, so I could just handle the yarn.  The idea then dawned on me to stick it onto an A4 file, which I could have in front of me with the spine facing away to give me the angle I needed.

I suspected I’d be pulling on the yarn a fair bit so quite a lot of cellotape was needed to make sure the hook stayed in one place!  The folder also needed to be kept still, so I tried sticking it to the table but found this too high for comfort.  Sitting on the sofa with the folder on a non-slip lap tray was much more comfortable.

Now all I had to do was work the yarn around the hook, by wrapping it round with one hand and moving what I’d already crocheted over the end of the hook with my other hand.

1. Hook stuck on folder with yarn wrapped round  2. Row of chain stitches being pulled over hook

I was right about the amount of cellotape needed – I pull on both the yarn and the item-in-the-making fairly hard so I can achieve what I need to (so much so it needed to be re-stuck three months after I started in May, and really needs doing again now…).

Now, this blog wouldn’t be complete without telling you what I’m making!

I’ve started with a relatively simple (but definitely not small) project, a granny square blanket.  Simple because you make lots of small squares over and over again that you then join together to make your blanket.  I learnt the way anyone learns to do anything these days, on YouTube!  I used a fantastic tutorial created by blogger and crochet YouTuber Bella Coco, which you can find here.  She’s done lots of tutorials so if you already crochet and want some fresh ideas check out her channel!

I’ve chosen three colours (pink, purple and turquoise) and I love the way they go together.  My first few squares were single colours, but then I experimented with a pink and purple square, and it just snowballed into this…

Nine completed  multicoloured squares with white borders

There are FAR too many possible combinations for me to stick to just a few, especially as this is a ‘trial’ blanket that I can have a bit of fun with, so I’ve decided to do as many combinations as take my fancy before putting them all together at the end!  I’ve been reeeaaaally tempted to start joining them, but I’m trying to be patient so that I can move them around when I’ve done them all and get the colour balance right.  I will eventually have a blanket for my sofa, but perhaps not by this winter, especially as I’m working on a cross stitch project at the same time!

What I love about crochet is being able to create something from scratch and know that it is ALL through my effort, down to the colours and the way they’re put together, so I love seeing my squares grow and multiply!  I also enjoy it as something completely different to the cross stitch I’m doing, where I’m following a pattern and all the colours are there for me.

My blanket is just the beginning of my crochet journey and I can’t wait to get stuck into some of the many other projects I’ve seen.  It’ll be an exciting challenge working out how to handle bigger projects around my hook, as well as joining my squares as the blanket grows.  I should probably finish at least one of my current projects first though…

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.