Introductions and A Little of my Story
Hi!
My name is Freya and I am currently a 19 year old university student studying in London. Tibetan, part of my degree, is my main love and if you ever meet me I will most probably want to teach you how to say "There are many yaks in Tibet"in Tibetan (btw it's བོད་ལ་གཡག་མང་པོ་ཡོད་རེད།།). Beyond my studies I have many other interests including photography, drag and of course my eternal love for Elton John! I am a complete human with many passions but I am also someone who has always strongly identified with the word 'disabled.' Disabilities and other diagnosable challenges have had a constant presence in my life. Over the last 17 years I have been diagnosed with a handful of things, all at different points in my life, namely mild cerebral palsy, mild hearing loss, anxiety and most recently dyslexia. This is not to say that I am defined by these words or any diagnosis, as I have made evident I am much more than my medical complications. However, many of these things do affect me on a daily basis and have helped shape me as a person, so I believe it is important to recognise and talk about them. Additionally, I have always gravitated towards the word 'disabled' for myself, though others may disprove. In my eyes all the word 'disabled' says is that my body has tried to stop me doing certain things and has repeatedly failed. Surely that is something that I can be proud of!
As this is a blog created to discuss the experience of disability as a young adult in progress, I thought I would start by giving you a little of my story. In this entry I will focus upon cerebral palsy, as this was my first diagnosis and the word that has been with me longest. I was first diagnosed with cerebral palsy at about two and a half years old, my parents having struggled for an assessment due to my stunted progress in walking. I could only crawl on my knees, presumably an unpleasant restriction, as we had wooden flooring. My parents were concerned after they'd heard those two words, a concern worsened by the fact that the doctor received a phone call before having the chance to explain. Though CP affects everyone differently and to different extents, there are many preconceptions one may have of the condition. As it turned out my CP was mild, one of the many reasons I am to be considered lucky. I was also lucky just to be born into a country and a health care system that could provide me with a load of free support, including physiotherapy and splints. However, despite my mild diagnosis my CP was still evident at a young age, causing bad coordination, extreme clumsiness and physical fatigue. Though I would always try everything and have always been stubborn, it was unlikely I would be top of my class for P.E. In fact I was recently shown a video clip from an old class assembly and one of the first things I noticed was that I was having some amount of difficulty with the actions of A Sailor went to Sea, due to poor hand eye coordination. However, none of this seem to stop me and despite my being challenged by physical activity, I activity rarely sat still! I enjoyed running about and playing games, becoming obsessed with football, and if I feel down I got back up.
The really difficulty appeared when I began to struggle socially. The bullying I received was always put down to a number of factors, but to me it has always been clear that the CP was one of them. This isn't to say that the CP was to blame, but rather other's perceptions of the CP. Sometimes people fear what is different rather than celebrating it, and when you're the child wearing knee high splints covered in kittens and falling over several times a day you are most definitely concerned different. When the CP wasn't the reason it still aided their bullying, making me a little slower and easier to chase. As I got older I also began to learn how many different horrible ways there are to describe those of us within this community, occasionally attempting to reclaim some of these words but always failing due to the gross taste they left in my mouth. Even as the splints came off and I began to fall over a little less, there were still many ways in which my disability affected me and it was impossible to hide, a fact I would later learn to love.
But progress continued to be made and I discovered a new challenge, the phrase 'you're not really disabled.' There seems to be an illusion within the able bodied world that if you're not in a wheelchair or on some waiting list for surgery, you're disability is no longer legitimate. As my treatment decreased and my benefits fell away I began to have people telling me I was 'no longer disabled,' often congratulating me in a odd fashion that suggested it had been a terrible thing to ever have been diagnosed in the first place. Sure, I had worked hard to improve my situation, but never with the goal of getting rid of my disability, both because I couldn't and also because I was now at a point where I found pride in my disabled label. It was as if there was some shame that they expected me to be desperate to shift. Possibly the most frustrating thing about this mind set was that it assumed that it was up to the government or some stranger's opinion to decide if I was disabled. My disability has only ever been a conversation between my body and medical professionals. CP is not something to be cured and it still affects me when I am not receiving treatment, often causing fatigue, muscle pain and a remaining clumsiness that has become a part of my character.
The peak of this was probably after my 2nd bunion operation in 2016 when someone I considered important to me told me that I no longer had to think about my cerebral palsy, since this was my last operation for the foreseeable future. At the time I was unsure how to reply but in retrospect I see that I should have notified them of their ignorance. Firstly, the term 'last operation for the foreseeable future' feels to me like a great metaphor for London's relationship with construction, they are always saying they're finished but you never know for how long. Many physical disabilities are unpredictable and will continue to show themselves as you age, meaning there is always the possible need for more treatment, especially as with CP you may reach certain ageing milestones earlier. Secondly, as I stated previously disabilities still affect us in-between or after treatment. Whether you know it or not we may be struggling or in pain, just in a different way then when we were children. Sometimes my muscles get tired, causing me to limp without noticing or throw my purse at someone when my hand gives out. Sometimes my back plays up or I fall over if I've been walking too long, I just don't whine to you about it! Just because you don't see any wheels, it doesn't mean that you aren't witnessing disability.
To this day I still get a bit embarrassed when people glare at me for sitting at the front of the bus and sometimes I still push myself too far out of stubbornness. However, over the years I have learnt that my body is something to work with and not against, and the ways I identify are not for anyone else to approve or criticise. My cerebral palsy has been with me a long time and kind of like an old friend who can be a bit of a fusspot but never means to upset you, I appreciate my CP. I may now have fewer problems doing the actions for a Sailor went to Sea, but my CP is still here with me. My CP has helped me to be the stubborn person I am today and has caused me to be more thoughtful about how I interact with others, some of whom I have met through my CP. In the words of Francesca Martinez, I am 'wobbly' and I wouldn't have it any other way! Just don't walk too fast when you're with me...
See you later alligators x
My name is Freya and I am currently a 19 year old university student studying in London. Tibetan, part of my degree, is my main love and if you ever meet me I will most probably want to teach you how to say "There are many yaks in Tibet"in Tibetan (btw it's བོད་ལ་གཡག་མང་པོ་ཡོད་རེད།།). Beyond my studies I have many other interests including photography, drag and of course my eternal love for Elton John! I am a complete human with many passions but I am also someone who has always strongly identified with the word 'disabled.' Disabilities and other diagnosable challenges have had a constant presence in my life. Over the last 17 years I have been diagnosed with a handful of things, all at different points in my life, namely mild cerebral palsy, mild hearing loss, anxiety and most recently dyslexia. This is not to say that I am defined by these words or any diagnosis, as I have made evident I am much more than my medical complications. However, many of these things do affect me on a daily basis and have helped shape me as a person, so I believe it is important to recognise and talk about them. Additionally, I have always gravitated towards the word 'disabled' for myself, though others may disprove. In my eyes all the word 'disabled' says is that my body has tried to stop me doing certain things and has repeatedly failed. Surely that is something that I can be proud of!
As this is a blog created to discuss the experience of disability as a young adult in progress, I thought I would start by giving you a little of my story. In this entry I will focus upon cerebral palsy, as this was my first diagnosis and the word that has been with me longest. I was first diagnosed with cerebral palsy at about two and a half years old, my parents having struggled for an assessment due to my stunted progress in walking. I could only crawl on my knees, presumably an unpleasant restriction, as we had wooden flooring. My parents were concerned after they'd heard those two words, a concern worsened by the fact that the doctor received a phone call before having the chance to explain. Though CP affects everyone differently and to different extents, there are many preconceptions one may have of the condition. As it turned out my CP was mild, one of the many reasons I am to be considered lucky. I was also lucky just to be born into a country and a health care system that could provide me with a load of free support, including physiotherapy and splints. However, despite my mild diagnosis my CP was still evident at a young age, causing bad coordination, extreme clumsiness and physical fatigue. Though I would always try everything and have always been stubborn, it was unlikely I would be top of my class for P.E. In fact I was recently shown a video clip from an old class assembly and one of the first things I noticed was that I was having some amount of difficulty with the actions of A Sailor went to Sea, due to poor hand eye coordination. However, none of this seem to stop me and despite my being challenged by physical activity, I activity rarely sat still! I enjoyed running about and playing games, becoming obsessed with football, and if I feel down I got back up.
The really difficulty appeared when I began to struggle socially. The bullying I received was always put down to a number of factors, but to me it has always been clear that the CP was one of them. This isn't to say that the CP was to blame, but rather other's perceptions of the CP. Sometimes people fear what is different rather than celebrating it, and when you're the child wearing knee high splints covered in kittens and falling over several times a day you are most definitely concerned different. When the CP wasn't the reason it still aided their bullying, making me a little slower and easier to chase. As I got older I also began to learn how many different horrible ways there are to describe those of us within this community, occasionally attempting to reclaim some of these words but always failing due to the gross taste they left in my mouth. Even as the splints came off and I began to fall over a little less, there were still many ways in which my disability affected me and it was impossible to hide, a fact I would later learn to love.
But progress continued to be made and I discovered a new challenge, the phrase 'you're not really disabled.' There seems to be an illusion within the able bodied world that if you're not in a wheelchair or on some waiting list for surgery, you're disability is no longer legitimate. As my treatment decreased and my benefits fell away I began to have people telling me I was 'no longer disabled,' often congratulating me in a odd fashion that suggested it had been a terrible thing to ever have been diagnosed in the first place. Sure, I had worked hard to improve my situation, but never with the goal of getting rid of my disability, both because I couldn't and also because I was now at a point where I found pride in my disabled label. It was as if there was some shame that they expected me to be desperate to shift. Possibly the most frustrating thing about this mind set was that it assumed that it was up to the government or some stranger's opinion to decide if I was disabled. My disability has only ever been a conversation between my body and medical professionals. CP is not something to be cured and it still affects me when I am not receiving treatment, often causing fatigue, muscle pain and a remaining clumsiness that has become a part of my character.
The peak of this was probably after my 2nd bunion operation in 2016 when someone I considered important to me told me that I no longer had to think about my cerebral palsy, since this was my last operation for the foreseeable future. At the time I was unsure how to reply but in retrospect I see that I should have notified them of their ignorance. Firstly, the term 'last operation for the foreseeable future' feels to me like a great metaphor for London's relationship with construction, they are always saying they're finished but you never know for how long. Many physical disabilities are unpredictable and will continue to show themselves as you age, meaning there is always the possible need for more treatment, especially as with CP you may reach certain ageing milestones earlier. Secondly, as I stated previously disabilities still affect us in-between or after treatment. Whether you know it or not we may be struggling or in pain, just in a different way then when we were children. Sometimes my muscles get tired, causing me to limp without noticing or throw my purse at someone when my hand gives out. Sometimes my back plays up or I fall over if I've been walking too long, I just don't whine to you about it! Just because you don't see any wheels, it doesn't mean that you aren't witnessing disability.
To this day I still get a bit embarrassed when people glare at me for sitting at the front of the bus and sometimes I still push myself too far out of stubbornness. However, over the years I have learnt that my body is something to work with and not against, and the ways I identify are not for anyone else to approve or criticise. My cerebral palsy has been with me a long time and kind of like an old friend who can be a bit of a fusspot but never means to upset you, I appreciate my CP. I may now have fewer problems doing the actions for a Sailor went to Sea, but my CP is still here with me. My CP has helped me to be the stubborn person I am today and has caused me to be more thoughtful about how I interact with others, some of whom I have met through my CP. In the words of Francesca Martinez, I am 'wobbly' and I wouldn't have it any other way! Just don't walk too fast when you're with me...
See you later alligators x
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