Cerebral Palsy Scotland

My life as an ambulatory wheelchair user – Mhairi McKendrick

As part of Cerebral Palsy Awareness Month, Mhairi shares her story of being an ambulatory wheelchair user and the stigma that she has faced.

My name is Mhairi McKendrick and I have been living with cerebral palsy for 23 years now. As it is Cerebral Palsy Awareness Month, I thought I would share my thoughts on the stigma and misconceptions around being an ambulatory wheelchair user. If you don’t already know the definition of an ambulatory wheelchair user is, from my understanding it is: Someone who can walk but cannot walk for long distances or needs support to do so.

When most people meet me, I am in my wheelchair, because I meet most new people in my life at college. This definitely changes their view of me as a member of the class, they don’t involve me as much as the other people in my class, I should mention that I am the only person in my class that uses walking aids or use a wheelchair. It could just be a personality clash, but I’m not so sure. It doesn’t help that I am quite introverted when in my everyday life.

The way they treat me just shows that the stigma of fear of the unknown is still rampant in today’s society. It kind of annoys me because I have done nothing to my knowledge to make them feel weird around me. Like when I drop something when I am sitting in my wheelchair, sometimes I can pick up the item by getting out of my wheelchair but most of the time I have very little to no energy to do this. When this happens I have to ask my classmates for help and I cannot help but think that they’re thinking ‘Why does she need help?? she can walk!’ but they never ask me why I need the help.

From family testimonials, I know that it took me until I was 3 years old to walk unaided for 100 meters. This was a massive relief for my parents and a big raspberry to the face for the doctor that told them I would probably never walk or talk independently. As you now know I can do both of those things. One of the biggest blessings that has helped me maintain my stamina during my childhood specifically week-long physio that I had access to from the age of 2 till I finished high school. Without them I would not have kept the amount of stamina that I have.

Throughout the pandemic and even then, I have definitely lost a lot of it through not having the motivation or opportunity to walk during that time. The biggest stigma I have faced as a part time wheelchair user is something I touched on earlier- the confusion over why some ambulatory people need wheelchairs. For me its 2 factors: pain and energy levels.

Sitting here and writing this article: my ankles ache, my lower back is throbbing and I think that if I try to stand up I may just fall over or severely stumble over my own feet. It could be a whole other reason that someone who can walk makes use of a wheelchair. It is up to us as a society to normalise every version of wheelchair using there is. Not all wheelchair users are paralysed. Not all people who use a wheelchair are unable to communicate.

Here are some statistics about Cerebral Palsy: 1 in 3 are unable to walk. About 40-50 percent of individuals with cerebral palsy are wheelchair users.

The energy used to move by a person with cerebral palsy is three to five times more than that of a person without cerebral palsy. I am extremely grateful for the opportunity I have had throughout my life. So that I gained the skill of walking and had access to a manual wheelchair so I could access the world.

What does independence mean to me? – Melissa Cassidy

As part of cerebral palsy awareness month, Melissa Cassidy has written a blog about independence and what it means to her. 

What does independence mean to me?

As you grow up with a disability there’s always increasing questions that arise in yourself and from others about how independent you are going to be in life. There’s always the assumption that you as a disabled person don’t have the same desire as others to be independent which can often be quite harmful and discouraging. I think this belief comes from the idea that most disabled people lack ambition – for most people this couldn’t be further from the truth.

Independence is a very personal concept and no two people will have the same definition of independence. For example, when I was seven years old I thought independence was being able to get dressed myself, when I was twelve I thought being able to take showers and baths myself was independence and now I see it as being in control of my week and doing things like studying and writing. I’ve learned through this that independence is subjective. Personally I’m very ambitious so often I can inflate my definition of independence which can become overwhelming; I think this is because I’m lucky in the abilities that I do have and as a result of this I push myself. Overall though, you can’t define independence or say who is or isn’t independent.

If we want to use the arbitrary scale of independence though – I’d say I am fairly independent. I’ve had my house adapted to allow me to do essentially all my personal care myself which I’m really thankful for. I go out with friends myself and I can use public transport safely. Keep in mind that I’m 17 now so all this has been gradually worked towards and nothing has come easy. I am still working on learning kitchen skills though and currently this is what I think would limit me from moving out (a huge personal goal). I also can’t do my own hair which is why I’ve kept it short for most of my teenage life although I have started growing it out in determination to find a solution. Sometimes I find it difficult to accept that I need help because I am so desperate to be prepared for adult life.

There’s also very much a social pressure to be independent when you’re disabled. It’s almost like people see those who manage the stereotypical definition of “independence” and are disabled as better than those who don’t which is pretty absurd. I often get asked a lot nowadays questions like “how will you get a job?” Or “how will you live alone?” And while these aren’t asked with bad intentions I think it’s quite rude firstly to assume that everyone must follow these paths and secondly to assume that disabled people can’t achieve these things. Judging people based on they’re “independence” is also really hypocritical in the sense that if a disabled person can’t dress themselves they’re seen as not “independent” but if an able-bodied person breaks their arm and can’t dress themselves we don’t suddenly think if them differently or imagine their lives differently.

Ultimately independence as a disabled person is about achieving the goals you set for yourself as opposed to living up to a societal standard of what you should be doing. It doesn’t change who you are because in my opinion a person is what they can do, not what they can’t.

Going to school with cerebral palsy – Melissa Cassidy

As part of Cerebral Palsy Awareness month, Melissa shares her experiences of education as a person with cerebral palsy.

Melissa is a young author and disability activist. Growing up, writing was the most effective way she could communicate. Melissa has her own blog called Buttons and Ramps which you can find here – https://buttonsandramps.wordpress.com

Going to school with cerebral palsy – Melissa Cassidy. 

School – the foundations of almost every modern life or at least somewhere parents can temporarily abandon their annoying children. Regardless of how you see it, everyone has a different experience of school. When you have a disability though it adds a whole new layer of physical, emotional and social challenges. I want to share my experience of education in the hope that it illuminates what going to school can look like when you have a disability.

Let’s start at the beginning: after a traumatic birth my parents are left with a (abnormally good looking) disabled baby and a future of uncertainty of what my life was going to be. They didn’t know where to send me to go to nursery until the health visitor suggests a special nursery conjoined with a school called Kelburn Park. My parents didn’t know too much about disability but decided to check it out as an option. My mum tells me that the first visit we had I came out with a beaming smile and begged her to let me go there. The nursery was perfect for me and I honestly don’t have one bad memory of it. My mum said it was quite scary at first as they collected the kids from their homes to take to nursery and she didn’t enjoy having to hand me over every morning which is ironic because she’d probably love a moment of peace like that nowadays. I was a really happy, outgoing child so at nursery I could often be found pretending to perform plays, writing stories and painting.

Special nursery was definitely the right place for me but things changed when I went into primary one at the special school. While I was having fun, my parents grew concerned that by Christmas in primary one I hadn’t really developed my reading skills and by the end of the year they made the tough choice to move me into mainstream school. While this wasn’t easy, they felt I needed the same level of education as my sister. Ultimately this was the right decision, although I was starting a year late I settled in really well. This kickstarted the phase of me realising that I was different to my peers which got me down for a few years and definitely affected the way I felt about myself but I was fortunate to be relatively included and accepted by my peers and definitely flourished at my primary school.

Then came Secondary school and this is where I really started struggling. The first year at Secondary school, I found it incredibly difficult to make friends as I watched most of my other friends find other friendship groups while I struggled to speak to people because I was so self-conscious. This also resulted in me having some resentment against my helpers at school because I just wanted to be “normal”.

Looking back, I wish I had had better role models and more confidence as my lack of confidence then has definitely had a ripple effect on where I am now. Eventually I had to let go of the internal desperation to be like everyone else and this is where I started forming better relationships with my assistants and even made a few friends. Forming that bond with my assistants especially my closest one whom I often refer to as “my second mother” was crucial to me getting my confidence back.

Another thing that had a huge impact on my confidence was the arrival of a new drama teacher, in the space of a month I went from silently loathing drama to confidently laughing and performing with my class. Once I felt that encouragement nothing stopped me and I actually ended up getting a drama qualification two years after.

What I’ve learned about going to mainstream school is that confidence in yourself is everything. I lost a lot of time in my life being self-conscious and not wanting to put myself out there when that is the only way you are going to thrive in a mainstream school. My family and I have all been through an incredibly transformative journey as I’ve gone through school but the opportunity to get that mainstream education has been entirely worth it.