Reflections and a challenge from Andy Tomlinson as World CP Day approaches.

World Cerebral palsy day is approaching and the annual conference hosted by Bobath and Digby Brown is just round the corner, I can’t believe that it’s almost a year since the last conference, what an action packed year it has been. I thought this would be a great opportunity to reflect on what’s happened with me and share my hopes for the future both personally and as community assembled around cerebral palsy and disability in general.

Since last conference I succeeded in climbing both Mount Meru and Kilimanjaro, raised £2400, came back exhausted developed shingles and until recently still felt lethargic. Looking back on my experience it has highlighted the importance of community in allowing the individual to achieve their dreams and go beyond what one could do on their own. Without the guides, porters, and fellow trekkers working together the experience would never be as enjoyable nor would I be in a position to achieve my dream of reaching the top of Africa.

I have lots of memories, Gideon the ranger with his riffle, the green slopes and the volcanic ash cone, and scrambling in pitch black in the dead of night, and the abundance of wild life on mount Meru; to the isolation and sheer vastness and the final dance the team when you reach the end of your encounter on Kilimanjaro. One of the main reasons I survived was because of my guide DJ and his radio blasting out 80s power ballads. I can confirm that it’s the Power of Love that took me to the top. I want thank guides, porters, KE Adventures, family, friends and everyone who donated. Although still not had opportunity to get reward from Glasgow Warriors for taking their name to Tanzania!!!

As I have achieved one dream, I must look to new dreams, new challenges and new fights. However it is not enough to dream for me only, I must open my heart and dream for you also, for your neighbour, and future generations. We as a community have to take simultaneously the dreams of those of the past and open ourselves to dreams from the future that have yet to be dreamt.

We as a community still have fights to win, people with disabilities are still crippled, not from our impairments but from discrimination and segregation.

It’s the 21^st century however some people cannot make a simple train journey without the fear of the possibility of an embarrassing accident. I even watched on television a woman had surgery to have a catheter fitted because of a lack of working disabled toilets.

In 2016 the employment rate of working age disabled people was 46.5% compared to 84% non-disabled people. According to Papworth trust the two main barriers said by people with disabilities in gaining employment is job opportunities and transport 43% and 29% respectively.  30% of the time the thing that prevents a person with a disability who wants to work is transport.  So why in the transfer over from Disability Living Allowance to Personal Independence Payments are so many people losing access their mobility cars, or at least in fear of losing it?

Is this not a national own goal?  I don’t know about you, but I think this is ridiculous.

Just under 20% of the population within the UK has a registered disability. Together we make up the largest minority group. The UK has to realise that our prosperity and freedom as a nation are bound to the opportunities, prosperity and freedom of us with disabilities.

I think this is especially true in the current climate of the upcoming exit from the European Union. The opportunities of people with disabilities have a butterfly effect on everything to income generated by the treasury through tax, to spending in the NHS and social care. After years of austerity I wonder the costs and savings associated with the benefit shakeup? Has the nation and public purse benefited or have we stored a time bomb for the future? Capital expenditure on infrastructure to improve transport would surly have wide ranging benefits across the country.

I am aware that we have made vast improvements on the visibility and opportunities available to us, however I cannot be satisfied until the barriers that make it harder, and separated from living a full life still exist. I’m aware that many of us suffer depression, isolation and despair. Hiding in the shadows alone and in pain whether physical and emotionally. That’s why we have to dream!!!

Our dreams can be a light, a light that shines hope for a better tomorrow for us as individuals, as a community and as a nation.

I remember watching Selma, and Malcom X and it’s easy to forget that the civil rights movement although dominated by race was fought alongside those fighting for disability rights. Martin Luther King’s speech still arouses and stirs the soul. It forces you to dream for a land with no walls of separation. Where we can rejoice and sing in the simple satisfaction of who we are, brothers and sisters in a family of billions. Then as it is now we can never be satisfied in a situation where we can’t enter building, restaurants, trains or subways.  In this environment can dare claim to be equal?

Like King, I have a dream that people with disabilities will not be judged by the label of their impairment, but be judged instead by their unique gifts and strength of character. I have a dream that we will not be seen as people with disabilities but as husbands and wives, adventurers, bosses, work colleagues, brothers and sisters as equals learning what it is to be human side by side.

I have a dream that we all as a society can jump on the train whether from Glasgow to Edinburgh, or Glasgow to London without worrying that there is a working disabled toilet, nor feel like we go round in circles entering the subway. I have a dream that one day we can we are seen for the character and skills possessed and it’s this that leads to the same employment opportunities as the next person.

I have a dream that no matter the obstacles in the way people will dare to travel the four corners of the globe, I want people to travel to China, Tanzania, Nepal, Peru, and have the opportunity to experience what I experienced in January.

When we allow the freedom to summit our mountains, and explore the wonders this world has to offer whether we are disabled, able-bodied, rich, or poor. Joining together in our common humanity raising a light that illuminates the myriad of possibilities available if we only dare to open ourselves up and reach out a hand of acceptance. Should we endeavour, then maybe we can turn this dream into reality.  Only then will I rest and possibly discover a new dream.

Andy Tomlinson

This week Marion shares her experience of moving from school to adult services.

Hi, its Marion here again, I wrote a blog about my experience with cerebral palsy a few months ago for Bobath and I have been asked to write about  my experience using adult services so here it goes.

I left my school in 2001 where I had speech, physio and OT in the one place, I also attended Bobath during my school days. Once I left school, I was also out of the hospital system of the Yorkhill Childrens’ Hospital. I attended the Fraser of Allander Unit there until the age of 18. They kept a check on my medicine, weight and tube which was a great service.

I found the transfer from Children Services to Adults Services very difficult as everything including Bobath just stopped when I needed the input the most. I could not get physio.  The best thing I could get was a physio unit in a cottage hospital near to where I stay.   Even then they did not know very much about Cerebral Palsy so I was just put on a pedalling machine once a week.

I could not even get speech and language therapy which I needed as around the time I left school I got a new communication aid. There was nothing for people who had cerebral palsy,  however if I had a learning difficulty then I would get  speech and language therapy, which I found so unfair of the system .

I managed to get back to Bobath before the adult service started. Lucky, because if there was no Bobath I would have had no physio therapy to keep me moving .

I feel that there is a lack of services for people who have cerebral palsy when they reach adulthood,  that is a need which has not been met.

Past 18, there was not a lot for me in the way of help, if my family and myself weren’t pushing I could have ended up in a day centre, instead of going to college and getting my European Computer Driving Licence.

I would tell young adults if you know what you want never give in. Remember it’s your life, try to do what you want and not what someone thinks best for you.

School leavers should be prepared for all of their services to change and possibly stop all together. They should be ready to push for all the services and medical treatment that they will need as adults as it is very difficult to get these without being very persistent. The social work department seemed to be a lot less concerned as I became an adult although I feel my needs are equally important now as they were as a child.

Join Jill: Jill reflects on what she’d tell her 18 year old self

‘Speak up for yourself and live life as normal as you can’ – Jill shares her thoughts on leaving school and moving to adult life.

While I was at school I had everything on a plate such as getting equipment or seeing somebody like a physio therapist, speech therapist or dietician and any support I needed. 

When I was getting ready to leave school my parents and I was a bit worried about after I had left school, like when I need something like support workers to take me out to college or work, and getting equipment.

Once I left school I went college and now I work. In order for me to do these things I needed to get  2 support workers.   I get support workers from Key community and thankfully I am still in touch with a speech therapist and a dietician if I need anything.

I use communication device and when I was at school my communication device was funded by the education board but once I left school that was worrying me that ‘what if I need a new Communication device? Who will funds it?’. You do hear  about disabled people that  can’t get equipment that they need because of funding but I have been one of the lucky ones. I have  found it easy to get equipment which I need.

Leaving school and going in to the big bad world it can be quite scary for anyone.  And if you have a disability, it is very worrying. You wonder a lot about ‘What will I do what if I need anything like equipment or support?’

I know it is really hard not to worry but you have a voice so use it  and speak up for yourself .

Don’t give up until you get everything you  need because why you can’t live your life as normal?  The way I see it, if you are quiet and don’t ask for anything people will just think that that person is OK. That isn’t what you want. 

Next week: We’ll hear from Marion Burns about her experience of the transtion from school to independent life.

Kirsty tells us about her experience at last week’s Teen Academy.

I can remember when Teen Academy was in its early days, before it was even called Teen Academy. Three years ago I attended Bobath Scotland’s “Girl’s Group” with two other girls who also had mild Cerebral Palsy. Being a shy fourteen year old who would always ask for help (even when I didn’t necessarily need it) the group built up my confidence and helped to make me the independent person that I am today. I remember particularly enjoying the week as everyday there was either a visitor, i.e. Gary Spence from Capital FM, or a group activity, like walking to the café for a drink or playing a game. Even though these activities were incredibly fun, they also built up my communication skills and independence. The therapists showed me that, as great as it may seem to be able to rely on other people for everything, it is not necessary to do so as an adult.

Three years on, it feels strange to be on the other side. My week observing and helping at Teen Academy has, I have to admit, been one of the best weeks of my life. I have loved chatting to the teens, of all abilities, about their lives, and it has shown me that, no matter our level of CP, our ability to talk or walk or how many crutches we own, everyone is battling to be the best, strongest, most clever human being that we can be. Being around people with the same condition as me has made me feel like I’m part of one big family, and that my CP is nothing to be ashamed of!

One of the things I absolutely adore about Bobath Scotland is the atmosphere. The centre feels incredibly homely and above all, exudes from it such an immense amount of positive energy. Whenever I used to come here for therapy, I would enjoy every moment of it – as, with the creativeness of the therapists, it never felt as if I was solely doing physio – it was fun therapy. And that’s exactly what this year’s Teen Academy set out to do.

As I entered the kitchen on Monday morning for the first time in three years, I was greeted with the sight of the younger teens working hard, paired up with their own personal therapist for the week. I was directed to the back room, where I met the charming Jennifer, who had begun working on her goal of being able to take her jumper off by herself. The teens have a set of goals which they aim to achieve by the end of the week, and use a points system to score themselves on how well they think they perform these tasks. Jennifer scored herself a 3/10 for removing her jumper, but could manage this by the end of the first hour. During the second hour, the group worked together to make ice cream and soup. Everyone had a task to do, from chopping leaks to switching on mixers, and it was great to see the teens, who had only just met that morning, getting along and communicating well with each other.

Now that I knew what was in store, I was eager to begin my second day at the Teen Academy. Even though I wasn’t receiving any of the physio, I enjoyed observing the way in which the therapists worked with the teens – never giving up on their goals, even when it may have seemed impossible. I was more confident on the Tuesday, and spent the first hour strolling in and out of rooms, talking to the teens and watching them working on their goals. Kyle wanted to make a cup of tea and toast, and of course I was on hand to make sure the toast tasted just right! During the second hour, the young teens were introduced to the static bikes, which was the beginning of their challenge for the week. They had to clock up as many miles as possible by the end of the week.

The afternoon group began with their individual goals; Elise and Eilidh worked on their cooking skills, Abigail continued to work on strengthening her arm and back, and Neil buttered some cinnamon bagels, which, fortunately I was there to inspect (They tasted very nice!). Afterwards, the group split; half using the exercise bikes, half playing tennis on the Wii. Everyone in the afternoon group was incredibly competitive, a contrast from the morning’s supportive atmosphere, this being proven by Neil cycling so fast on the static bike that one of the pedals came off!

 

 

By the Wednesday I had gotten to know the teens rather well. It was great to see their progress over the course of the week, and I had become more confident with helping the therapists, and chatting to the younger teenagers. Everyone began by working individually; from fastening buttons to eating Nutella, the kitchen was buzzing with productiveness. Another thing that I love about Teen Academy is that no goal is too little, or too big, whatever the abilities of the teens, the therapists work with them to ensure they get as much as they possibly can out of the week. Afterwards, SJ and Jennifer decided to have another go on the static bikes, whilst Kieran, Eilidh and Kyle had fun playing bowling on the Wii.

The afternoon brought with it the opportunity for me to speak to the group. Kirsty, who is a GP and also has Cerebral Palsy, came along to tell the teens about her journey into employment. She spoke about how she never ruled anything out just because of her disability; her guidance teacher at high school was against her pursuing a career in medicine, however she thought to herself “I’ll give it ago, and if it doesn’t work out, at least I’ll know I’ve tried it”. It was great to hear these words from someone similar to me who actually got into the job she wanted, and it has inspired me, and the other teens to fight for what we want in life, and to never give up. I then told the teens about why I chose to volunteer at Bobath and the opportunities it may bring me in the future. I wanted to show the older teens that, even though employment may seem like uncharted waters, there are steps you can take in order to make life after education less daunting.

 

Thursday morning was a bit different. As I strolled into the kitchen at my usual time, I was met by a wave of paparazzi, producers and parents. STV had come to visit. I was quickly propped onto a seat and told to smile for the camera as a huge cheque was handed over to us! This was the grant awarded to Bobath Scotland by the Scottish Children’s Charity so that Teen Academy could run smoothly this year and to its full potential. The chaos continued even after the cameras had gone as Gary Spence from Capital FM, accompanied by his roadies, invaded the kitchen with a rather large mixing table and two booming speakers. The music began, and each of the younger teens had their turn of switching between tracks and scratching something that looked, and sounded, a lot like a vinyl record. Everyone was up and dancing and the positive energy was through the roof!

In the afternoon, the older teens were visited by speakers from Scottish Disability Sport, who told the group about the variety of opportunities their group had to offer them; from volunteering to competing in tournaments/matches, the pair spoke about the variety of games and sports they held across Scotland and how the teens could get involved. After that, the group then played yet another game of Boccia (with a few more rules this time, just to make it even trickier) – the scores were now almost even, with the Gladiators just scraping a win with one extra point.

The final day of Teen Academy was by far the most heart-warming. After achieving their individual goals, the young teens then played a game of “Disco Bingo” and had a go at Boccia. The girls (Eilidh and Jennifer) won 6-2, proving that there is such a thing as Girl Power! Afterwards the parents came into the kitchen to watch the teens be presented with their certificates. This was an awards ceremony far superior to the Oscars or Brits, as being able to witness the proud expressions on the teen’s faces is something I won’t forget in a hurry! The parents all seemed extremely thrilled with their children’s progress and very interested on how to maintain this.

The afternoon was very similar. After she achieved her goal of being able to tie the belt on her very fashionable shirt, I spoke to Eilidh about how she was getting on at university. Eilidh is going into her second year of law at uni, and shares my love of literature. We got chatting about classic authors like Charlotte Bronte, and soon the rest of the group joined us to chat before playing one last game of Boccia, this time it was Therapists VS Teens. Unfortunately, after many, many “deciders” the therapists won 13-10. After our defeat, the teen’s parents came in to witness yet another awards ceremony, and this time my name was called. I was thanked for helping out over the week, but the phrase “my pleasure” has never reigned so true.

The week I spent at Bobath’s Teen Academy has been an incredible opportunity. I have loved seeing the teens progress and most importantly, enjoying themselves. It is such a wonderful experience to be surrounded by people my age that are in a similar situation to me, hence I feel this is the reason Teen Academy works so well. In my opinion, it makes the teens feel less alone, and more understood by their peers – that is the case for me, anyway, as all of my friends are able bodied, and although they are understanding of my condition, it was refreshing to be around teens who didn’t fret over me or be especially cautious around me, and treated me, dare I say, as an equal.

 

“I thought the week overall was a great success, like every other time I’ve been to Bobath I thought the approaches there achieved notable progress.” – Eilidh, 18.

Join Jill: Disabled Access – Jill’s been out and about in Glasgow

Jill shares her experiences of disabled access, good and bad, and asks for more Changing Places facilities.

As a disabled person who uses a wheelchair all of the time, disabled  access is really important to me and for many other people. Without disabled access in places disabled people  couldn’t go  anywhere that we want.

Good disabled access is when there is ramps, a lot of space to move around, have big disabled toilet with all equipment in it such as a hoist and lifts.

Over the years I had very bad experiences of bad disabled access like going  in to a shop and what I want to see is upstairs or downstairs and there are no lifts, or going into a disabled toilet and it is too small and there are no hoists.

Me and my friend loved going to the restaurant called TGI but the TGI in Glasgow city centre isn’t accessible. First there are steps to get in to the restaurant but I must say that the restaurant staff are quite good getting a ramp down to get in  to the restaurant. However, once you get in the restaurant it is very tight to move a wheelchair around.  The other problem is the toilet. It is  right next to the  kitchen (which I don’t think that is right) and then once you  get in the  toilet, the toilet bowl is on a step up so you need to step up to sit on the toilet and that isn’t really good for a disabled toilet.

Like I said before, one of main things of good access which it is really important to  me is disabled toilets.  Everywhere has or (should have) a standard disabled toilet.  A standard disabled toilet is a big room to move around in and hand bars but these disabled toilets aren’t quite so good for everyone like me who requires a hoist.

 As someone who requires a hoist to get to the toilet I am very aware of the  lack of places in Glasgow where there is a disabled toilet with a  hoist and therefore I can’t  go  where I  want to in  case that I need the toilet. I am pleased to say that it is getting better thanks to Changing Places.

Changing Places is an organization that campaigns for public places to get a Changing Places toilet.   A Changing Places toilet is  for people with profound and multiple learning disabilities, as well people with other physical disabilities such as spinal injuries, muscular dystrophy and multiple sclerosis often need extra equipment and space to allow them to use the toilets safely and comfortably. These needs are met by Changing Places toilets.

A changing   places toilet has all of the equipment that a disabled person needs such as a hoist,   adult changing bed, shower and a lot space to move around.

Glasgow  has  a quite few changing  places toilets now, such as Braehead  shopping  centre, St Enoch centre, the Hydro and a lot more  but it isn’t enough because when you    think about it. There is about ten shopping centres in Glasgow but just two out of the ten does have a changing places toilet. The numbers are really terrible!

Back to all disabled access, it is really  important to all  disabled people because really without disabled access disabled people can’t go anywhere that they want.

One of the things which makes myself angry about access is seeing a place just built or that has just been up dated and there isn’t any disabled access, such as no ramp, too tight to move around inside or not the right disabled toilet (Changing Places toilet).  I remember reading a story on the internet about a little boy who is in a wheelchair and he went in to toy shop which it was just opened.  The toys which the little boy wanted to see were upstairs but there wasn’t any lifts, and for a new shop it is really terrible.

I hope in the future that everywhere and anywhere will have the right disabled access,

Jill

P.S. If you’d like to find a great toilet please visit http://www.changing-places.org/find_a_toilet.aspx