Join Jill: Raising awareness and why it matters

Learn about some of Jill’s experiences of getting involved to change things for the better for people with disabilities. 

What could you to do help speak up for people with disabilities?

I feel that raising awareness of disabilities is important thing to do when you are disabled yourself, it helps people understand you better. 

I love raising awareness of different things such as AAC (Augmentative and Alternative Communication), changing places toilets, cerebral palsy and anything else about being disabled.

With raising awareness of AAC I have a lot of stuff to make awareness of AAC. I have done a lot of talks like at Scottish parliament about AAC, about my experiences of AAC, how to communicate with someone which AAC and just how important AAC is.  As pair of raising awareness of AAC I am very involved in making AAC the key by being in a few steering groups to get my views across.

 I did some of campaigning for changing places toilets in Glasgow because there wasn’t enough changing places toilet in Glasgow. I had a   petition around to get more changing places toilet in Glasgow. The campaign was successful and now there is a lot more changing places in Glasgow.  I was involved in a group who  made sure that queen street  train station has the Right disabled access after it has been done up.

I am a part of  a group called tag (the advisory group)  The Advisory Group has been going since 1996. It was originally set up by KEY Community Supports to enable people with learning disabilities to have a stronger voice in the services they use and in their local communities. The Advisory Group has been going since 1996. It was originally set up by KEY Community Supports to enable people with learning disabilities to have a stronger voice in the services they use and in their local communities. I  am a part of Glasgow west tag and national tag too.

 In my job I do a lot of blogs about myself and experiences of life with a disability.

 

I do all of these things  to  raise awareness of   disabled people to say if  somebody who is disabled that doesn’t mean they are stupid and can’t live their life as normal. I know from my personal experiences that sadly there is a lot of people sees people like myself and think they hear disabled aww, that’s a shame they don’t know any better but that’s where raising awareness comes in.  By  raising awareness of something it is really helping  people to understand.

Doing speeches and writing blogs I know that I go on about myself and it may seem like I am a bit of show off but that isn’t the case at all.  I do it because I want to try and make people to understand me better as disabled person.

I like the saying “don’t judge someone by looking” but everybody does. It is hard not to.  But once you know the story of that person you understand and accept them more.  

Coming back to  about changing places toilets, people and places wouldn’t know about the toilets and how important a disabled toilet is for a disabled person without people like myself making awareness of these toilets

Sometimes when I am out and  out I get people  asking me what is that  meaning my talker because they  don’t know  what   a talker is but  by doing what I  have been doing like doing talking, that is helping  many people to understand  how I  communicate. 

 Let face it some people out there especially children don’t know anything about disability because they don’t know anyone who is disabled but if  schools teaches pupils what disability is then if these  pupils meet a disabled  person  later on in life we  will have better understanding of that person with a disability.  A few months back I did a talk in the high school about my AAC device and how you should communicate with someone used AAC.  I think it is very good that schools are doing that.

Having a disability is very hard but you need to overcome it.  For me, by raising awareness  of disability that is me overcome  my disability and saying look I am disabled but I can  live my life as normal as I can.

What could you to do help speak up for people with disabilities?

Email me today jill.clark@bobath.scot

 

Guest Blog: Meet Michael, from ERDA

In this week’s blog we meet Michael McEwan, Chair of East Renewfewshire Disability Action and find out what motivates him.

Hi, my name is Michael McEwan from Barrhead. I’m 34 and have cerebral palsy which affects me on my right side.

When I was at primary school I used to walk with a walking frame, l had to learn how to walk and got physiotherapy.  I went to two disability schools in Glasgow called Richmond Park and then on to Ashcraig Secondary. 

Fast forward to today , I advocate for people with a disability and also raise awareness of disability issues. I’m a Freelance Writer and Radio Presenter, also I am the chairman of my local disability group called East Renfrewshire Disability Action (ERDA). We meet on the last Monday of every month to talk about specific issues in our region. 

I love everything that I do to raise awareness of issues, so I have a disability but that’s no big issue, we are all the same at the end of the day.  

I have recently started work for a organisation called Limelight Music , a Scottish equalities professional music training and production company , mainly for those over the age of 25. They are delivering high quality inclusive music projects across Scotland , and also in Europe. 

As well as my media work , it is always about raising awareness so that is why I’m chairman for ERDA , we are a campaigning , inclusion , information, awareness and support group.

ERDA launched back in March 2011, it is important there is local disability organisation to raise the issues and concerns of disabled people at a local and national level.

Our members are both disabled and able bodied for more information on our work or if you like to be a member please have a look at the website at www.erda.org.uk.

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.