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Hi friends–Miggy here. When I don’t have a current spotlight I like to feature one from the archives. This spotlight happens to be the very first one I ever shared from an disabled adult–in other words, a first-hand account. I love interviewing families who are going through this special needs journey as their perspective is a valuable one, and in those early years we, the parents, are the voices and advocates for our children. However, I’ve also learned that as close as I am to my daughter, as much as I’ve experienced with her, I will never fully know what it’s like to walk in her shoes. My perspectives around disability shifted and opened up even more due to the many adults who have generously showed up in this space to share their valuable perspectives. Catherine was the first disabled adult to reach out to me and I’m so glad she did. Happy Friday.
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Hi Miggy! Thank you so much for having me! My name is Catherine, I am 22 years old and
I’m from Merseyside in the UK. I have congenital muscular dystrophy (CMD), a broad umbrella term for muscle-wasting diseases, which vary in severity and progression with every individual, but all present themselves at or soon after birth. My subtype of CMD, as yet unknown, is progressive in that I’ve lost skills and abilities as I’ve got older, and affects all voluntary muscles in my body. This means that I have very weak muscles and therefore require 24-hour support with all day-to-day activities and use a
wheelchair to get around. My respiratory muscles are also affected by muscle disease, so I use a non-invasive ventilator via a nose mask while resting or during sickness to support my breathing and a cough assist machine to prevent infection in my lungs. I also experience chronic hip and back pain due to my scoliosis.
Since leaving university last year, I live at my family home with my dad and older sister, though I am currently looking for my own place. I’m an employer to four full-time paid carers (caregivers), who provide my 24-hour support. I’m also hoping to get a part time job or voluntary position soon. I enjoy socializing
with friends, eating out, going to the cinema, shopping, doing arts and crafts, iPad, reading and watching TV and films. To relax, I mostly use my computer to surf the Internet, play games and watch TV shows on demand; I especially like it because it’s something I can do independently.
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Miggy: Catherine, I am so excited to be doing a spotlight first with you today. You are the first person I’ve interviewed who is not a parent or sibling of someone with special needs, but who actually has special needs themselves. I am so thankful to you for lending your experience, perspective and voice today, so thank you. Let’s start with your childhood, at what age were you diagnosed? Do you remember the first
time you really understood that you were different from other kids? Can you take us back to that realization and the thoughts and feelings you had?
Catherine: I was diagnosed with my condition at around a year or eighteen months old, so I can’t ever remember not being disabled, especially since I’ve never had the muscle strength to be able to crawl or
walk. I went to special needs nursery from age two, so I’ve been surrounded by peers with a huge range of different abilities, both physical and learning, from a very young age, which I think made me aware that everyone is different very early on in life. This, coupled with the fact that I have three older able-bodied siblings, means that I can’t really remember a time when I didn’t realize that I was different or had limitations compared to other people. When I started mainstream primary school at age seven or eight (in the UK, primary school starts at age five, but I was educated at a special needs nursery/school from age two until age seven, when it was decided that academically, I would do better in a mainstream school. This was at a time when mainstreaming special needs children was virtually unknown), I began to get very frustrated and upset that I couldn’t keep up with my classmates at playtime and in P. E. I also felt quite isolated and alone, since I was the only disabled student at the school. Thankfully, my peers were immediately very accepting of me, seeing me rather than my wheelchair/disability, and myself, my classmates and my teachers found ways to include me in games, activities and lessons.
Miggy: Tell us a little about growing up in your family. How did your parents help and encourage you through the years? Do you have any siblings? If so, how did those relationships shape you and
your perception of yourself? Do you feel like there’s something your parents or your family did really well as you were growing up?
Catherine: As I mentioned above, I grew up with three older able-bodied siblings. My parents treated me the same as them, obviously I needed more physical help than they did, but I was never really spoilt (well, maybe a little, since I am the youngest!) or wrapped in cotton wool. This made my disability just a
regular part of life, which I think has influenced my acceptance and positive view of my disability. I’m particularly close with my two older brothers, especially since our mum passed away when I was thirteen; as I am closest in age in to them, they were my role models growing up, and I always aspired to be just like them. This meant I was quite a tomboy when I was younger, always wanting to join in with the boys on their video games, and we were (and still are!) very competitive! I think this competitive streak has definitely benefitted me as I’ve grown up, it’s helped me become ambitious and determined to achieve my goals despite the barriers my disability may put in my way. As I’ve got older, my brothers and dad remain very close and have been my biggest cheerleaders, encouraging me to pursue my dreams, pushing me to achieve my potential and reminding me of the bigger picture and how much I have already achieved when I’m finding things difficult.
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Miggy: That’s so wonderful Catherine, I’m glad you have a supportive family. Now for a tough question, I know this is a big fear of every parent, but especially those of us with children who have special needs. Catherine, were you ever teased or bullied as a child? If so, how did you cope with that? Was there anything in particular that helped?
Catherine: Yes, I hate to have to tell you this, but unfortunately there was an incident of bullying when I was younger–around Christmastime when I was ten or eleven, a boy in my class sent me and a girl with a mild learning disability an anonymous Christmas card saying something along the lines of “Merry Christmas, I hope you die.” To start with, I wasn’t really upset, I think I may have even laughed it off as I was so in shock, but when I saw how upset the other girl was, together we went to speak to the head
teacher, who found out who it was and forced him to make a public apology. As I’ve got older, I realized what a serious and hurtful incident it was, especially since I have a life-limiting condition, and wish the boy’s punishment had been more severe to educate him about the seriousness of his behavior.
I’ve also had experiences where I have been excluded by “friends” both intentionally and unintentionally. To this day, this has made me very insecure as to whether people are friends because they like me, or out of some sort of pity. Currently I am very lucky to have a small group of close friends who see past my disability, see me for who I really am and go out of their way to make sure I am included.
Miggy: While I don’t want to dwell on the negative, I feel that I also need to follow up that question with asking about discrimination, as I know people with disabilities can often feel discriminated against. Is this something you feel like you deal with often? If so, again how do you cope? What can we do to help combat this problem?
Catherine: Sadly, I do quite often feel discriminated against, and that it is something I come up against regularly in day-to-day life. One of the most serious acts of discrimination that I remember occurred when I was looking at high schools; the head teacher at one of the schools ignored me and told my parents that I’d be unable to go to the school as he was unwilling to make the adaptations for my needs. Thankfully it all worked out for the best, as we found a high school that saw my academic potential and, although they’d never had a student with a disability as severe as mine, were keen to make the necessary adaptations. Currently, as I am a recent graduate, I am very concerned about discrimination in employment; I’m seriously worried that employers will ignore my academic achievements and extra-curricular activities and just see my disability, favoring able-bodied applicants with perhaps lesser qualifications because they are perceived to be more productive, take less sick days etc. compared to me, a belief I think is perpetuated by the media, at least in the UK.
The discrimination I encounter in everyday life, such as poor wheelchair access, I’d like to put down to ignorance; I feel there’s a major lack of disability awareness in the UK and the one-size-fits-all approach to disability inclusion needs to stop. Disabled people are individuals too and sometimes it needs some creative thinking to accommodate them. The main things I think we can do to combat discrimination is to raise awareness of disability, educate people about the nature of disabilities and how we’re just regular people with some additional needs, campaign and speak out against discrimination, and highlight good practice of disability provision. I’m part of a group of young disabled campaigners trying to achieve this and influence government policy, as (if you haven’t guessed by how much I’ve got to say on the topic!) it’s something I’m very passionate about. You can read more about our group, Trailblazers, here.
Miggy: Moving on to a more positive note, Catherine you graduated from college! A remarkable feat for anyone. Will you share what it was like for you to accomplish this goal? I know you use a wheelchair and also have carers who assist and support you, so what were the main obstacles you had to address and overcome? What did you study and what do you hope to do with your degree?
Catherine: Thank you! I’d say it has been my proudest achievement to date, as I persevered, despite the barriers and problems I came up against, because I was determined to reach my goal. The main obstacle I had to overcome was with carers, which I was managing myself for the first time. As my carers were volunteers with no care experience I had to train them from scratch, I did not get on with some of them, and some left leaving me with no care–it felt like everything that could go wrong did! It was especially difficult as I was at a university ninety minutes drive from home, so I didn’t really have the “safety net” of family and friends I do at home..png)
Unfortunately my health got in the way and I was forced to cut short my studies in my final term due to severe pain. It’s still my proudest achievement though, as university is so much more than getting a degree; I learned to be independent and manage my care, became more confident and assertive and made life-long friends
I gained my aegrotat degree (awarded on medical grounds) in English Language. I hope to find a part-time job or voluntary role in charity work. I’ve been so fortunate to have support from a number of great charities, in particular my amazing children’s hospice, so I want to give something back and pass on my ideas and experiences to people who need them.
Miggy: Catherine is there anything else you’d like to share with my readers–words of wisdom, a special story of even a piece of advice?
Catherine: I’ll try and keep this short and just say that although I wouldn’t wish my condition on anyone, I honestly wouldn’t want to get rid of it. I wouldn’t be the same person without it and it’s an integral part of who I am. It’s shaped how I view the world and how I approach it. That being said, that’s all it is–just one square of the patchwork quilt that makes up who I am. I want to be remembered for something I’ve achieved or my outlook on life, not be defined by my disability. That’s all disabled people want, at least from my perspective anyway, to be recognized by their abilities and not their limitations, and to be seen as individuals with ambitions and aspirations.
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Ahhhhh Catherine! Thank you so much. That was wonderful. I really appreciate your candid answers about bullying and discrimination–even better I love that you’re doing something about it! What a wonderful group to be a part of. (I wonder if there is something like this in the States?) It also made me smile to hear about your wonderful family–the love and support of a good family can move mountains. I admire you for your courage to live your life to the fullest, challenging yourself and achieving your goals. There are far too many people–disabilities or not–who live below their abilities. Finally, I really appreciate your parting thoughts… You wouldn’t change your condition, because it’s such an integral part of who you are, but you also don’t want to be defined by your disability either. I know I feel the same way for my daughter and I imagine many other special needs parents feel the same too. Thanks again Catherine! And good luck in your continued career pursuits.
If you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!
XO,
Miggy
