Intro to my blog

My name is Helen McLaughlin. I am a University Student, who has physical disabilities, both visible and invisible conditions. Raising awareness of all things disability-related has always been something important to me, but I’ve recently been inspired to do a blog after experiences that come down to simply not enough awareness existing. I want to do my bit to change this. In this blog, I want to focus on points of discussion around disability. All opinions are my own, unless stated otherwise. I hope that you find my blog interesting and engaging. Please feel free to let me know what you think, or if there are any topics you particularly want me to cover. You can leave a comment or email:

disabilityawarenessblogger@hotmail.com

Please see my Facebook page, where I am posting my blog posts and also interesting articles etc. called: Disabilityawarenessblogger

Update from the year and the future of my blog :)

Hi, first things first, I’m back!!! It’s been such a long time since I wrote my last own blog post so I thought I’d do an update on what’s been happening and my thoughts about this blog for the future. Lots has happened this year; I’ve graduated and started a new course in Counselling, as well as it being a year full of lots of wheelchair dance times. It’s also been a year where I’ve taken the chance to reflect a lot on my thoughts and feelings on disability in the past and present, which brings me onto the future of these blog posts.

When I started this blog post originally, it was something I did because I wanted to talk about particular experiences and ideas about disability that I felt are not always talked about enough. I guess I wanted to use the blog to present what I feel is often underrepresented. And that will still be part of my blog, but reflecting this year has taught me a lot about my feelings on wanting to present particular underrepresented parts of disability (potentially future blog post material) and in many ways, this past year has shown me that my experiences of disability, what disability means for me and my thoughts and feelings about this aren’t such concrete ideas, but things that change for me as I do too. I think partly being a young adult, I’m at a stage where things are changing a lot for me and I’m thinking through my future and what my goals, priorities and values are, and so the role that disability has in my life, as well as my thoughts and questions about this are changing too. So…. I’ve decided I want my blog page to go down a slightly different path. I would like my blog page to show the overall journey that I’m on, so some posts may elaborate on ideas I shared in earlier posts and some may differ in opinion to ones I’ve previously written, based on what my experiences have been since then and how my understanding is changing. I would like my blog posts to be a chance to reflect on some of my experiences and thoughts and feelings as I learn and develop, so I want each post to be like a snapshot of  how I experienced things and what was coming up for me about my experiences at the particular time that they were written. I hope you will  find my journey interesting – feel free to keep sharing posts, and if you have comments, I’d love to hear from you.

Helen x

Riding Everest: Interview with Max

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Hi Max, can you tell us a bit about yourself?

Hi Helen! Well, I live in London with my girlfriend and our cat, I work in the finance industry in the City, I ride horses every week in the Hyde Park Barracks and I have lived with Cerebral Palsy for my whole life. Oh, and one other thing – in April this year, I’ll be riding to Everest Base Camp on a horse!

How do you experience your impairment?

My Cerebral Palsy affects my life in many different ways. It makes my muscles tight and difficult to control, especially the muscles in my hands, arms and legs.

This means that I use an electric wheelchair to get around, and I need help to do almost everything in my life – washing, getting dressed, going to the loo, eating… I need 24 hour care.

What is your Riding Everest project about?

I started riding horses when I was 5 years old, because my parents saw an advert for the Riding for the Disabled Association (RDA) in the newspaper. Now, RDA are building a national training centre in Warwickshire to allow many, many more disabled people like me, as well as people with learning difficulties, and a whole host of other conditions to access the amazing benefits of riding, both as a social activity and as a physical therapy.

I’ve always wanted to do something crazy like ride a horse up a mountain, and when I heard about RDA’s plan for the national training centre, it seemed like the perfect opportunity to raise money for a charity that has done so much for me.

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What I’ve found since starting it though, is that it has been amazing to have a social impact too, and change people’s perceptions of disability while I’m at it. So many people with Cerebral Palsy and other disabilities have got in touch with me to tell me what an awesome project it is. I’ve also heard from lots of parents of young children with disabilities, and I think my story gives them hope for their kids, hope that they will be able to live independently and happily when they are adults.

What is involved in your training?

Training has been tough so far, and in the final stretch before the trek it’s only getting tougher! Lots of endurance riding, around the countryside with my team, mostly!

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Also, for parts of the trek, such as bridges or steep steps, I’ll have to get off the horse and walk with the help of two Nepalese Sherpas. To train for those bits, I’ve been climbing the stairs in my block of flats with physiotherapist and my girlfriend. It’s not quite Everest but it sure feels that way sometimes!!

What do you wish there was more awareness of when it comes to disability?

For me, visibility is awareness. There aren’t enough disabled people in the media – Paralympians are amazing, but they seem to be the be-all and end-all of disability representation on the TV. I’d like to see more disabled people in drama and comedy, more disabled comedians make it to the mainstream, and for more stories about disabled people in Hollywood – stories where we are the heroes and stories that don’t focus on tragedy!

That’s why I’m so excited about the documentary film that’s being made about this trek! I’m looking forward to creating an opportunity to show the wider public that disabled people are diverse and interesting and do amazing things!

Being disabled and the world of work

The reality of being disabled in the world of work isn’t being less productive. It’s not getting a job out of kindness that you don’t deserve. The reality is debating whether to disclose. When and how to disclose. And whether it will affect your chances. It’s working hard to get the grades and experience you need to prepare you for your career. It’s not hearing back about your applications. It’s being rejected from jobs that you have all of the experience and grades for. It’s waiting for that dream job and that employer who will see beyond a diagnosis and see your potential. That employer that you know is out there who will see the impairment as one part of you, but not the defining part. That it is part of who you are, and in a good way too. That it brings so many positives as well as  challenges. That it has formed your character. Made you more determined. It’s getting that yes, that chance after so many applications. Getting that dream job. That job that you contribute so much to.

Presentation of disability: realistic?

For today’s blog, I decided to write about the presentation of disability in the media. In recent years, there has been a shift in how disability is presented, moving from disabled people as ‘charity’ and ‘objects of sympathy or pity’ to the idea of the ‘supercrip’, particularly when it comes to adverts with Paralympians. And of course, I’m happy that society is moving away from disability as something to pity or ignoring its existence altogether. But, the ‘inspirational/ heroic supercrip’ is presented as somebody who works to overcome their impairment and becomes a top athlete. The problem with the idea of the ‘inspirational/ heroic supercrip’ is it presents disability as something to be ‘overcome’, something that can be overcome with hard work, and the ‘successful goal’ becomes to be a no. 1 athlete, something for disabled people to aspire to. But when it comes to the existence of an impairment, it isn’t something that can just be overcome if you put in the effort and work on it, and being no.1 in sports isn’t a goal for everybody. Life happens with a disability, not despite of it. And yes, that does often mean overcoming social barriers. But, what it doesn’t mean is that the impairment is overcome or not there anymore. The idea that an impairment is something to be overcome is just not true. Disabled people can do incredible things, just as much people without an impairment can, but those brilliant things happen at the same time as the impairment existing; Paralympians still experience disability in everyday life in a world that hasn’t necessarily been set up with disabled people in mind, or through the experiences of their impairment. People’s experiences happen and being disabled is one part of those experiences, not necessarily the dominant thing, but it’s there. If we want to have more accurate portrayals of disability, we have to move away from ideas of disabled people as ‘objects of sympathy’ as well as ideas of ‘the supercrip’. Both of these make the experience of disability something extraordinary, when in fact a lot of the time it isn’t that interesting, just a part of everyday life doing everyday things.  Disability is something that anybody can experience at any time, and the more we can approach the ‘everyday’ of disability, the more realistic we can be about it.

Guest blog post from Rebecca

For today’s blog post, Rebecca decided to write about her experiences:

I was diagnosed with Multiple Sclerosis (MS) in 2006 at the age of 22.  I had recently qualified as a physiotherapist and was less than two years into my first job.  I was an active, fit person and enjoyed running and snowboarding.  My diagnosis came as an absolutely devastating blow to me and turned the future I had planned upside down. 

 Adjusting to life with MS has been a physical and psychological journey for me.  In the first few years I had a really turbulent time with a very active disease, meaning lots of relapses and sadly none of the treatments I was trying seemed to help.  As a result of this I accumulated a lot of damage to my spinal cord and deteriorated a lot physically.  Adapting to the ways in which my body has changed and learning how to look after myself has been really difficult.  The problems people can see are just the tip of the iceberg in how my MS affects me.  As well as the weakness and spasticity that affect my legs and trunk, I also have problems with fatigue, my swallowing, my bladder, the sensation to my legs and I also struggle with neuropathic pain, which can range from an annoying itching sensation to a horrendous burning pain.  These problems are things I manage on a daily basis and are hugely debilitating.  However, adjusting to life with these problems and finding a way to live positively with them has been an equal, if not greater challenge.

 Initially I found it very difficult to come to terms with the loss of the future I had expected.  I became very depressed and spent a long time focusing on what I had lost.  I struggled to accept my disease and myself as a wheelchair user and found it difficult it to go out socially. I was jealous of my friends who were moving on with their lives, getting promotions or getting engaged whilst I was struggling to leave the house. However, with a lot of help and huge perseverance I started to overcome the difficulties I was having and started to come to terms with my disease and disability.

 I was able to return to work as a physiotherapist and worked for several years as a wheelchair user.   Going back to work was an enormous challenge as I worried that people would respond negatively to their physiotherapist being a wheelchair user.  However, I was pleasantly surprised and never encountered any negative attitudes towards my disability.  Although I had to adapt my practice and needed some additional support for some aspects of my work I was still able to contribute and use my skills, albeit in a slightly different way.  

 Following on from this success my confidence began to return and I started exploring what else I could do. I learnt to sit ski and this opened the door to being able to enjoy skiing holidays with my family again.  I found that the more I tried to do whilst accommodating my disability and working with it, instead of fighting against it, the more I enjoyed myself and found I was still able to do the things I loved.  The thrill I get from flying down a mountain in a sit ski is equal to the thrill I got when I snowboarded.  This realisation has been an enormous part of me living positively with my MS, instead of fighting against it.

 The decision about whether to have children was a really difficult one for me.  Prior to my diagnosis, I had always imagined myself as a Mum, but I was concerned about how I would cope with the additional demands of having a baby on top of my disability.  However, my husband and I decided that we couldn’t let these problems get in the way of something we had both always wanted.  We would face whatever challenges arose and find a way to manage. In 2012 and 2015 I had my two children. The challenges of looking after a baby were enormous and managing my health alongside this has been incredibly difficult and sadly meant further deterioration of my health.  However, I consider myself lucky to have been blessed with two wonderful children who inspire me every day to be the best Mum I can be for them. I have an amazing husband and family who are brilliant at supporting me and I am so pleased I didn’t let the fear of these problems stop me from having children, because they are the best thing I have ever done. I look after my children in the same way any other Mum looks after her children; I just do it in a slightly different way.

 Earlier this year I decided to start looking for an opportunity to try something new and joined FreeWheelin Dance group in Birmingham.  I quickly fell in love with dance and discovered it had both physical and psychological benefits, whilst also being enormous fun.  Shortly after this I was offered the opportunity to try out for Team England Para Cheer Hip Hop. Amazingly, I was successful and will be representing England at the World Championships in Florida in April 2018.  I am so excited to be representing my country in a sport I love and would never have had this opportunity without my MS.  This achievement means so much to me because of the journey I have been on to reach this point.  Stepping out of my comfort zone and pushing myself to try something new has once again changed my life. The positive focus on my ability rather than my disability has been life changing and is how I will endeavor to live the rest of my life.

Interview with Bill: Perceptions of disability, life with Asperger’s Syndrome and raising awareness

Hi Bill, can you tell us a bit about yourself?

Absolutely! My name is Bill Fawcett. I am 21 years old, a Modern Foreign languages student at Warwick University and I am currently on an Erasmus+ supported year abroad at the Georg August Universität in Göttingen, Germany.  I am studying Political Sciences and Hispanic Studies.

What does having Asperger’s syndrome mean to you?

To put it simply, it means quite a lot.  It has its drawbacks, in that I may seem awkward and shy in some social situations, and I have some difficulty conversing with other people, and maybe I don’t understand nuance and subtleties in things like literature and film, but it has some undeniable positives. I don’t think I’d be the type of person I am without it. My mother said a few years ago that “Asperger’s is what makes you Bill, and that is what is so good about it”. I have not seen it as a defining characteristic of me but I do appreciate the positive impact it has on my life.  For example, it has given me the gift of a near photographic memory, which certainly comes in handy when it comes to exam season! It also gives me a unique perspective and an individual viewpoint on world matters.

What do you want more people to be aware of?

Great question. I think there have been great strides taken in public awareness of disability, and there is far more public education about not just so-called ‘visible’ conditions but also about ‘invisible’ disabilities. One thing that I wish more people were aware of is that there is so much more that autistic/Asperger’s people are capable of. Case in point would be my friend from school, who is further down the line on the autistic spectrum, but has made a name for himself at his university for being a great actor, and due to this he has made a lot of friends. He is in some way an inspiration for me.

What are your experiences of living with an ‘invisible’ condition?

When I was younger, and my Asperger’s traits were far more pronounced than they are now, my experiences of living with it were slightly different. I used to sit on my mother’s lap as a six-year-old and ask her to pull faces corresponding to different emotions like a sad face or an angry face, and then I’d forget the next day and ask her to do it again, which must have been frustrating for her. Nowadays however, because my traits are almost non-existent, people treat me like a normal person, which is not how I was treated in primary and prep school. I began to find it far easier to make friends from the age of 13 onwards, and so I quickly came out of my shell.

 How do you see the perceptions of disability in society?

Having seen how people have supported me throughout my journey so far with this condition I have, of course, a slightly different view of this than other people with disabilities, both visible and invisible. I see from the way that people at university, especially me, see you and not your walking frame or your wheelchair, means that there have been great strides made in reducing the stigma surrounding disability. I think there are still strides to be made, especially with regards to employment opportunities and accessibility for disabled people, but it is so amazing to see how differently disabled people are treated now, compared with just ten years ago. It is also inspiring to see the impact that disabled people are having in the world, the famous of whom being Steven Hawking, whose disability has proven to be no barrier to his success and his scientific research.

What do you think would improve life for disabled people today?

Fantastic question.  I think there are still hurdles to clear, but we are well on our way in doing so.  I think the words ‘disabled’, ‘disability’ and ‘special needs’ are sometimes perceived in a negative way, in that they are unable to perform certain tasks.  I think seeing a disabled person as maybe unable to do one thing but able to shine at another is a good way to go. I have never seen my Asperger’s diagnosis as a difficulty, and that’s because I have always had friends who have never seen it that way, and also because I am a ferocious optimist.

Thank you for taking part in this interview! Any final comments you would like to add?

As a closing remark, I would like to thank you for including me in this disability awareness drive.  You have always been a great friend to me at university, and I know that our friendship will only continue in the future. It has been an honour for me to be able to share my thoughts on this critical public issue.  I have always thought that being involved in something is a great way to affect change, and that is why I am so hungry to be involved with politics, which I believe should be about unlocking as much potential in as many people as possible, and treating every man and woman with equal respect and dignity, regardless of their circumstances.  One of the quotes that has guided my life is from Winston Churchill who said: “The pessimist is the one who sees a difficulty in every opportunity, the optimist is the one who sees an opportunity in every difficulty”.  I have certainly had a difficulty in my life but I will always use it as a force for good. I am fiercely positive about the future for disabled people around the world, and anything I can do, I will.

 

 

Radio interview

So, last weekend was very exciting, I was a guest on the university radio station, RaW on Classics With Katy, to do a disability awareness special. Most of the pieces chosen for the show related to disability and we had various discussions between pieces. Our main discussion section is from 1:00:00- 1:11:30, so feel free to have a listen!