"Why can't you speak properly?" Child aged 5

Kids are great, they don't have any inhibitions or awareness about people's sensitivities and to be honest sometimes it is quite refreshing. Recently I have found it very hard to speak. Usually, speaking to children makes my speech much more fluent; I'm not entirely sure why but something about it being my comfort zone and the sing-song voice that most people adopt when with a small child makes it improve. However, in the last few weeks this has not been the case.

I have just started a block of speech therapy consisting of the usual breathing work and using soft sounds to start a word etc. All of this I have done before when I was a child and do not have the fondest memories associated with it. Any time I go back to therapy, I instantly think if all of my bad experiences of it and have to fight the 'fight or fly' reaction to it. But it's been very helpful, holistic and everything that I never thought therapy could actually be like so it's good.

Last week in speech therapy as I started to describe a very hard week with stammering and air all of my frustrations with not being able to express all of the thoughts in my head, how I can't 'jump' into a conversation at the right moment so I avoid speaking all together sometimes and bow unbelievably stupid I feel when I stammer I couldn't help but cry. This was not my intention as my childhood memories have taught me to not bring emotion to therapy as it never goes down too well, but it was too late to stop myself. They were very nice about it and helped me to realise that it doesn't make me look stupid at all. Since then, my speech has been so much better which is so nice, it makes me so happy that I'm able to get through one sentence without stopping and that I can talk to children without stopping over every word. I think I have downplayed the effect that my feelings about my stammer and the mountain of frustration that I feel towards it, has on my voice. I wish I could stop these feelings but I think it's a natural reaction to being trapped by your body and being unable to voice who you are and what you believe in. So my only solution is to vent more often, I needed to cry about it and will probably need to many more times in the future. I know that it'll fluctuate throughout my life as different stresses take their toll but I do not want to do myself a disservice by letting my stammer control when I speak. It will not win.

"My body belongs to different people"

I recently went to see a disabled stand-up comedian who spoke of his own experiences of living with cerebral palsy and the experiences of other disabled people. This was very strange for me because I don't spend much time with other disabled people and do not have friends with the same condition as me. It was nice because I felt that I could relate to many of the things that he said and so it normalised my own feelings towards my disability. For example, when he talked about having P.As he said 'its like my body belongs to lots of different people' and I thought that is so true and such a good way to phrase it. You see, I don't often let people into my thoughts, feelings and struggles that I have with being disabled because my friends and family don't always know how to respond. I don't mean they don't try, nor do I blame them for this because sometimes some of my experiences are so far outside of theirs that they just can't relate to it. But I've realised that I need to know other disabled people so that I can have a space to put my disability on the map, so that I can meet people who have experienced some of what I have experienced and so that my life story becomes less foreign to those around me and to myself. I don't just crave this to have someone that understands the difficulties, I also really want people who I can laugh with interviewing P.As or having a massive spasm in the 2 minute silence.... Not my finest hour!
It's strange to see other people with cerebral palsy because I suddenly realise that I'm on a spectrum of a condition which I don't really think about. It's difficult for me to see people who are more severly affected by the condition that I have. I don't interpret it as 'I'm so lucky' because I don't think that's fair to my situation plus it's quite offensive to the other disabled person. It's just that I think the only difference between my body and theirs is a tiny amount of brain damage and I don't know how to process this thought. In lots of ways though its comforting to know that what my legs do is typical of the condition that I have and I get to see what other people see when they look at me.
   I know that I have to stop pretending that I'm not disabled in social situations, by that I mean preventing myself from talking about the latest battle with social services or the patronising woman on the bus for example. I need to develop the confidence to bring my experiences into conversations because then I can feel that my disability is part of me not something to hide. In order to do this I think I have to try to make links with the disabled community because when I allow myself to acknowledge that my disability makes up a lot of who I am I think I'll feel more at peace with myself.

The graduate

I have a lot to process at the moment, I can't really believe I've done it (the getting a degree I mean) and I have no idea what my next steps are. I guess these feelings are 'normal' of most new graduates. I often have a hard time separating what feelings are 'normal' and those brought on by my situation because they are so interlinked and all of the 'normal' feelings are so magnified by the extra needs/considerations that I have. Though I do not always want to look at my achievements through a disabled lens, I know that I have overcome a lot of difficulties to get a degree and I should let myself acknowledge that. I think back to my visits to open days and being told that primary education was a very intense course, my year long struggle with social services to get funding for my help in which I was told that I should stop drinking tea so that I wouldn't need the toilet so much and the negative attitudes I dealt with on placement this year and I feel quite proud that I've done it. There is also a massive part of me that wants to go and shove my degree in all of those people's faces (that's the stubborn part of me coming out). I am very very determined and ultimately that has pulled me through but I've also really struggled with it and at times wanted to give up.  Nobody can be unaffected by people's reactions especially if they're negative and this year in particular has really shattered my confidence. It has been a very real struggle and I now need time off to process it and recover from the stress of it all. I'm looking forward to getting me back.

Pioneering the way forward

I have mixed thoughts on this. I am satisfied with the fact that I have made life easier for disabled children younger than me through paving the way forward in the schools that I have attended. I would also like to think that I've changed people's perceptions of disability and that through knowing me my friends/people I've worked with do not judge disabled people negatively. BUT I find myself thinking 'when can I stop pioneering and just be a person?'. It is hard to separate the duty towards being a disabled role model from my everyday life. Its a huge pressure and means that every setting I go into, there is an expectation that I will transform into the epitome of the life of the disabled which I'm just not. I do appreciate it when people recognise that I have battled against many obstacles and I do believe that there is a need to advocate change. It's just not a role I chose.

"Miss Greene, I did that all by my very own" Child, aged 5

Control and privacy are my biggest hurdles at times because I don't have a lot of either. I don't have the control or security of knowing that I can take care of myself and my own needs. I cannot decide what information about me is private and which is public. It's very difficult to feel in control when every decision that I make involves another person and when four or five people are involved in my personal care every week. I do not want to live my life being vulnerable or dependent on others. I am sometimes desperate to just be me and take care of myself but I know that it's a scary position for me to be in because I'm vulnerable and am without the support I need. It's hard for me to live life being forced into the position of a child and without the independence that I crave. One of the reasons that I am drawn to teaching is that I can identify with children in this way. I have to get a balance between being on my own and struggling and having support and privacy. I have not yet found a way to do this.

"Do you have hiccups?" Child aged 5

Up until three or four years ago, I never found stammering particularly frustrating. I was always of the mindset that I had bigger fish to fry and therefore didn't really pay much attention to my speech. But as I went to uni, my stammer changed, I don't like saying it got worse but it was definitely stronger and there were days when I just couldn't get words out as opposed to just stuttering now and then. This has been the case now for the last three years. The thing is, I know that going to university was inevitably going to cause a part of my condition to be affected as it was such a big change but I can't sit back and think 'oh well, that's life'. It is hugely frustrating and now affects every conversation that I enter into. At times, it makes me not want to start speaking because I know I'll have to keep stopping. The most annoying thing is that I cannot feel frustrated about it because this feeling makes it stronger so I pretend to myself that it's fine.
People often think I am 'more disabled' than I am because of my speech. This affects me more than words can describe. I don't think many people realise that lots of people equate wheelchair with learning difficulty and that for most of my childhood, when I met new people, I would be spoken to as if I were two and I know that if I spoke fluently, this stereotype would quickly be dismissed. I wish I didn't think this, but I am constantly looking for ways to make myself 'more normal' to fit into mainstream life and society. Stammering for me goes against this need.
I think it's also difficult because there aren't clear triggers and it doesn't happen when I'm nervous (a common misconception of stammering) nor am I clear in my head about whether its linked to, caused or perpetuated by having Cerebral Palsy.
I'm also still trying to find ways to explain it to children when they ask 'do you have hiccups' or 'can you not talk properly' but this is hard to do when I cannot even understand it fully myself!
Just a little advice: I couldn't do a blog on stammering without mentioning that I hate when people finish off my sentences for me. I am not the only stammeree who feels this way so please don't be tempted to do it. I know it's hard to watch someone struggle to get words out but it just adds to the frustration and makes me feel inadequate. There is more to life than speaking quickly (I just wish I'd listen to my own advice)

"Do you sleep in that in your bed?" Child aged 4

For me, having Cerebral Palsy is sometimes like having something missing. There are times that I think however happy I feel, being disabled will reduce this feeling-it will in some ways always make me sad but there are other times when I hardly think about it. I sometimes feel a sense of grief for myself that I never walked and that I will never be totally independent and I wonder what life would have been like if I had. But I do not allow myself to dwell on this for too long because it would ruin my life. I am not bitter nor am I resentful towards my situation. People often say to me 'you must think, why me' but I never do. I do not like this type of attitude because I find it quite self- indulgent. I was born with a condition and I have to get on with my life. My goal is and always has been to achieve my own personal best and concentrate on how to make life easier. I can't say that I never think about what could have been or about how nice it would be to not have a disability but I have lots of good things in my life and I tend to focus on those.

"Shall I put your footplate down for you Miss Greene?"

I know that I will encounter much negativity and ignorance in the future especially in relation to my choice of career. But I shouldn't have to face it. Having a disability does not prevent me from being a good teacher and it is not easy to be seen in this light no matter how much I try to stop it bothering me. I know that having a disability affects most aspects of my life and I'm okay with that but there are two main aspects that I never wanted it to impact upon, one of which is teaching.  My whole life has been geared towards achieving this aim as teaching is the only thing that I have ever wanted to do. I love working with children and helping them learn new things. It gives me a level of satisfaction that I do not get in any other situation. I am so passionate about education and helping people realise and achieve their potential. Despite this, I know that some people will only ever see a wheelchair and that there is very little I can do about that but I can gurantee it won't be the children I teach. I often think children aren't given enough credit, they are so open-minded and non-judgemental and I wish adults would take note of this. This is why I find comments that indicate that children don't feel comfortable/are harmed by being exposed to disability the most offensive. Most children just ask and then move on. My current placement class have just realised they have a doll in a wheelchair and keep bringing it to me saying 'look, its you!' (even though the doll does not look like me in the slightest) its brilliant because they are happy to make the association and to talk about disability. I am saddened that disability discrimination is still rife in the 21st century and that people aren't always willing to be flexible and adapt things to make them more inclusive. I will never teach in the same way as an able-bodied person would because I can't but there are plenty of ways to teach and I will find what works for me. I remember working in my gap year and it got to the summer term and I had made tyre tracks in the sand outside and one of the children was trying to work out why. He knew that they'd come from wheels but when asked 'who brings wheels to school?' he couldn't answer it because he no longer saw a wheelchair, he saw me.