Let’s help disabled people fulfill their potential

If there’s one thing that we progressives believe in more than anything else, it’s the power of people. That’s why at the core of us there’s so much passion and determination to unlock people’s potential, potential that’s wasted by the right’s politics of “you’re on your own.” And it’s potential that’s wasted by social security that fails to empower disabled people and their carers and, instead, traps them in poverty. That’s not something we’re prepared to stand and watch. That’s something we want to change.

In Australia, someone is registered as disabled every half an hour. In Britain, it’s every three minutes. In both Australia and Britain, one in five adults has a disability of some kind. That means that unless we give all disabled adults the chance to contribute, we’re only drawing on 80 percent of our power. We’re only firing on four out of five cylinders. That simply can’t be right.

It’s not right morally and it’s not good economically. The result is bad for the country – and it’s bad for disabled people. We believe in something simple: because disability can affect anyone, it affects everyone. That is why social security has got to change so that we make the right to live as full citizens in a free society a reality for disabled people.

In Australia, the Labor government laid the foundations for a revolution in services for thousands of disabled people, their families and carers. DisabilityCare Australia will mean that Australians with significant and permanent disabilities will have more power to choose their support and more control over how that support is provided. The program, gradually being rolled out across the country, is creating personal plans that put the goals and aspirations of individuals at the centre of the support they will receive.

The scheme will also give Australians peace of mind that their child or loved one will get the care and support they need in the event that they have a significant and permanent disability.

We think that Britain has a lot to learn from Australian Labor, so we’ll work together to study how the ground-breaking ideas pioneered by Labor can help make a difference in Britain.

Currently, in Britain, we support disabled people by putting them in the middle of a labyrinth and telling them to find their way out. There are assessments for social care. There are assessments for personal independence payment. There are assessments such as the work capability assessment.

Of course we need assessments – but at the moment, hundreds of thousands of the assessments are wrong. Years are wasted in court, where eventually 40 percent of appeals around employment and support assessments are won.

It is a monumental waste of money – £74m, according to evidence provided to the public accounts committee by Disability Rights UK. We spend £900m on Atos. We’re about to spend £540m on Atos and Capita.

It’s time to end the labyrinth. We’ll be looking at how we take the radical ideas of “whole person care”, developed by Andy Burnham, to bring services and benefits together to support disabled people in a new way. And we’re delighted that in Britain, Sir Bert Massie, a great pioneer of disability rights, will be working alongside us to make sure ideas are co produced with disabled people every step of the way.

Labour will be publishing a green paper on the idea next summer. It’ll be far stronger for the advice from Down Under.

Caring for yourself while caring for others

When you’re looking after someone else it can be easy to forget about looking after yourself. But keeping your physical health in check is a really important part of being able to care for someone else. Similarly, if your emotional health is not supported, it can be really difficult to get through the day. There are a number of services available which can help you get the right balance of physical and emotional wellbeing.

This might help if…

  • You are a young career-oriented person
  • You know a young career-oriented person
  • You want to know about maintaining physical and emotional health as a career-oriented person

young man sitting on pier holding book

Caring for someone can be emotionally and physically exhausting, particularly if they’re someone you deeply love. There are many times when it can be easy to forget about your own needs and focus entirely on the needs of the person you’re caring for.

Physical health

Looking after your physical health can be particularly difficult when you’re caring for another person. But if your physical health is not maintained, it can be difficult to feel on top of everything else. Some things you can do to stay physically healthy include:

  • Get moving – Try to get out and about every now and again, not only to get fresh air but also get your body moving.
  • Eat well – Don’t sacrifice your physical health by not eating wholesome food. Try to make sure you’re eating enough fruit and vegies to make your body function well.
  • Sleep well – Sleeping is such an important part of your physical health but can be easy to overlook. Make sure you’re getting at least 8 hours, even if you need to take naps during the day.

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Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.

TS Success Stories: Kristin, 17

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Kristin’s Tourette Syndrome Story

Q: What is your name & how old are you?

A: My name is Kristen, I am 17 years old, and I am from Pennsylvania.

Q: How long have you had Tourettes?

A: I was diagnosed with Tourette Syndrome 3 years ago, after my tics suddenly got more severe than they ever were. I had mild tics my whole life, but after a strep infection, they became very severe. I have a dual diagnosis of Tourette Syndrome and PANDAS.

Q: What kind of tics do you have?

A: Like everyone with TS, my tics change all of the time. My most common tics are head shaking, eye blinking, eye rolling, coughing, and moving my arms randomly. Other tics I have had include coprolalia, throat clearing, jumping, rolling around, and stomping. There are honestly too many to count!

Q: Do you have any associated conditions?

A: I have Tourette’s, OCD, anxiety, PANDAS (Pediatric Autoimmune Disorders Associated with Strep Infections), and some sensory problems. Sometimes they have a bigger impact on my life than the TS does!

Q: What’s life like living with TS?

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It’s good to be back at school amongst such supportive people!

Yesterday, I moved into the dorms at school. My anxiety was really high during the moving process, and it felt really overwhelming to have to move all my things into my room, unpack and deal with everyone around me. After everything got moved in and I got settled, things got a lot better. I got to be with my two really good friends and vent to them about my anxiety for a bit. Being able to talk about my anxiety with them instead of holding it inside seemed to really help.

Also after knowing them both for two full years, going on a third, they are very used to my tics and are very comfortable talking about TS. For a while we didn’t talk about my tics because they were afraid they were going to offend me or hurt my feelings. Now knowing me so well, they know that that’s not the case. They are able to freely joke about my tics with me, and I made sure to tell them last night that I like when they do that and that it makes me feel more comfortable.

My F-word tic was pretty active yesterday, and since it’s so new they’re still getting used to that one. But they’re doing a great job making me feel comfortable with it and letting me know it’s no big deal.

I also told them some camp stories from my amazing second year as a counselor at Camp Twitch and Shout, and I have so much more to tell them! I start classes on Monday and am looking forward to it!

What Makes Us Tic: Need YOUR info for a new TS documentary!

Hey everyone, so one of the elements that will be a major part of my new TS documentary is content created by you! Yes, you! Anyone who has done something on their own to create awareness for Tourette Syndrome can submit to the documentary! This could include- but is not limited to- personal vlogs, videos of awareness events, songs, poetry, art, etc.

This is a great medium to be able to make some noise about Tourette Syndrome awareness! For any questions, or to submit, please contact me at tic@bellamaria.ca.

TS Success Stories: Seth, 29

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Seth’s Story 

Q: What is your name and how old are you?

A: My name is Seth Tucker, I am 29 years old, and I live just outside Washington DC.

Q: How long have you had Tourette Syndrome?

A: I’ve had Tourette’s since I was 7 years old.

Q: What kinds of tics do you have?

A: My most common tics are my throat clearing and facial grimaces. I also have frequent arm/neck/leg movements, and a few tics that cause me to hit myself or bang my head into objects. Some tics come and go and they vary in frequency and severity.

Q: Do you have any associated conditions?

A: I have been diagnosed with OCD, ADHD, anxiety, auditory processing disorder and sensory processing issues.

Q: What is life like for you living with Tourette Syndrome?

A: While working I usually don’t have an issue with my Tourette’s. By using CBIT and medication I am able to generally suppress my tics. When I get home most of the tics explode out of me and I’ve broken furniture in the past. I’ve learned to take off my shirt and pants, wrap myself up tightly with a blanket and just let my tics go. It’s much safer for me as I don’t hurt myself as much.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

A: Learn to laugh and let the little things go. Life is too short and awesome to let something bother you for long,

especially if it’s something you can’t control.

Q: What is the hardest thing about living with Tourette Syndrome?

A: For me it’s watching others suffer with it (which is why I got involved with the TSA). While I have a few extreme tics, for the most part it’s the least challenging part of my day.

Q: What do you think other people should know about Tourette Syndrome?

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TS Success Stories: Martyna, 15

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Martyna’s Story

Q: What is your name and how old are you?

A: My name is Martyna, I’m 15 years old, and I’m from Poland.

Q: How long have you had Tourette Syndrome?

A: I was diagnosed with Tourette’s about 2 years ago.

Q: What kinds of tics do you have?

A: When I was younger I had a lot of different tics like eye rolling but they weren’t very noticeable. When I was 13 I started to shout and I didn’t know what was happening to me. My parents were really sad and angry. Now, I’m taking a medicine that really works for me so my tics are a lot better.

Q: What is life like for you living with Tourette Syndrome?

A: Life with Tourette’s is really hard. When I first started to have tics it is very difficult, but it got easier as time went on.

Q: What’s the hardest part about having Tourette’s?

A: I think the hardest part about having Tourette’s is meeting new people. They don’t know why I’m shouting and sometimes they are scared. It’s hard going to the movies and my main problem is going to church! I can’t stop ticcing in church.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

A: Don’t worry, just be happy! You must live the life! Dont worry about people who don’t understand. Think positively!

Q: What do you think other people should know about Tourette Syndrome?

A: Other people should know that our tics aren’t our fault and they should accept us.

Q: What are your strengths and what do you like to do?

A: I really love reading books! My favorite genre is fantasy. I am interested in learning more of the English language and next year I’m going to be in a special English competition.

Q: What are your goals in life?

A: When I grow up I want to be a doctor and help polish people who have Tourette Syndrome. I will be a doctor with my own experience with having Tourette’s. I would like to say you more but I can’t find enough words in English.

TS Success Stories: Steff, 23

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Steff’s Tourette Syndrome Story

Q: What is your name & how old are you?

A: Steff & 23.

Q: How long have you had Tourettes?

A: I was diagnosed when I was 7.

Q: What kind of tics do you have?

A: Most facial, some arm spasm like twitches .. when I type, like now…my hands twitch alot. When there is something wrong(toothache, knee pain, headache) my tics localize to that area. I’ve had a wink that I have had since I was diagnosed. That gets interesting sometimes.

Q: Do you have any associated conditions?

A: I have OCD, am mildly BiPolar, & have anxiety.

Q:What’s life like living with TS?

A: It’s life. I take each day for what it is & hope tomorow will be good too. My tics are worse at night, or when I am stressing and my anxiety picks up, other than that, I usually get by okay.

Q: What advice can you give others that are newly diagnosed?

A: Live your life! I am a regular person, I just move around more than others. I hate people on any TS site that hate the world. Yes, its rough, but it’s amazing also.

Q: Whats the hardest thing about having TS?

A: Meeting new people or getting a new job. People are so quick to judge. Seeing other people get down on themselves because of the condition.

Q: What do you think others should know about TS?

A: I am just like you, I just move more. You cant catch it, I cant help it, get over it.

Q: What are your strengths and what do you like to do?

A: I clean, alot. I also like to exercise. Not just run, but actually exercise. I also do alot with my dogs.

Q: What are your dreams & goals in life?

A: To help others with TS. To have a lovely family, with kids. They may or may not be born with Tourettes. But we will take that journey in stride when it comes.

Tim Howard NJCTS Leadership Academy was amazing!

Two weekends ago, my sister and I went to the Tim Howard NJCTS Leadership Academy. It was such an amazing experience. I made so many new friends and I learned so much! We had the opportunity to hear from medical professionals and learn more about our disorder. We worked hard while we were there, but we had so much fun. We immediately bonded with everyone there, and I would highly encourage others to go!