0:00:00 > 0:00:00- *
0:00:02 > 0:00:04- I'm James Lusted.
0:00:04 > 0:00:09- I'm 26 and I have Diastrophic - Dysplasia, a rare form of dwarfism.
0:00:09 > 0:00:13- I live at home with my parents - and brother Phil.
0:00:13 > 0:00:15- Phil has the same condition as me.
0:00:15 > 0:00:19- I don't allow my disability - to hold me back.
0:00:19 > 0:00:21- In fact, I hate the word disabled.
0:00:21 > 0:00:26- In this series, I'll travel Wales - to meet other disabled people...
0:00:27 > 0:00:30- ..to experience life - through their eyes.
0:00:45 > 0:00:47- I'm in Cardiff today.
0:00:47 > 0:00:49- I travelled down from Colwyn Bay.
0:00:49 > 0:00:51- It took about four hours.
0:00:52 > 0:00:54- I don't mind. I like driving.
0:00:55 > 0:00:59- We've come to meet Tina, - who has the condition Ataxia.
0:01:00 > 0:01:02- It's a rare condition.
0:01:02 > 0:01:04- Tina works for Disability Wales.
0:01:05 > 0:01:09- We're visiting her today - at work in Caerphilly.
0:01:11 > 0:01:16- We'll have a chat about her work, - her role with Disability Wales...
0:01:17 > 0:01:19- ..and about her life too.
0:01:35 > 0:01:40- Disability Wales was established as - an independent organization in 1972.
0:01:40 > 0:01:42- It has a unique role in Wales.
0:01:42 > 0:01:48- It promotes rights, equality and - independence for disabled people.
0:01:48 > 0:01:50- Tina enjoys working here.
0:01:50 > 0:01:53- Coming to work - in an office is different.
0:01:53 > 0:01:56- When you work at home...
0:01:56 > 0:01:58- ..you just do the work.
0:01:59 > 0:02:03- There's no-one there - to have some banter and fun.
0:02:03 > 0:02:06- Everyone works hard.
0:02:07 > 0:02:13- But you get breaks for a cup - of tea, a chat and some fun.
0:02:26 > 0:02:27- Hello, Tina.
0:02:27 > 0:02:28- Hello, Tina.- - Hi!
0:02:28 > 0:02:28- How are you? I'm James.
0:02:28 > 0:02:30- How are you? I'm James.- - It's nice to meet you.
0:02:30 > 0:02:31- And you. How are you?
0:02:31 > 0:02:32- And you. How are you?- - Fine.
0:02:32 > 0:02:34- Are you busy today?
0:02:34 > 0:02:36- Yes, like every day.
0:02:36 > 0:02:37- Good.
0:02:38 > 0:02:40- So you work here every day.
0:02:40 > 0:02:42- Yes. Would you like a look round?
0:02:42 > 0:02:44- Yes, great.
0:02:45 > 0:02:46- Tina works on a project...
0:02:47 > 0:02:50- ..to raise - Disability Wales's profile online...
0:02:51 > 0:02:55- ..and show disabled people - the advantages of the Internet.
0:02:56 > 0:02:58- How long have you worked here?
0:02:58 > 0:03:01- I've been here - about a year and a half.
0:03:02 > 0:03:03- Do you enjoy it?
0:03:03 > 0:03:04- I do.
0:03:06 > 0:03:08- My role involves a lot of work.
0:03:08 > 0:03:12- I do something different every day.
0:03:12 > 0:03:14- It keeps me going.
0:03:15 > 0:03:17- Tina's project hopes to ensure...
0:03:17 > 0:03:22- ..that disabled people are included - in digital developments.
0:03:23 > 0:03:26- This will be vital - when the benefits system changes.
0:03:27 > 0:03:32- When Universal Credit begins, - everyone will have to claim online.
0:03:32 > 0:03:36- With Universal Credit coming - over the next few years...
0:03:36 > 0:03:39- ..disabled people - will need to be digital.
0:03:39 > 0:03:44- It's frightening for people. A lot - of disabled people can't afford it.
0:03:45 > 0:03:50- We run the project with the Welsh - Government and Communities 2.0.
0:03:50 > 0:03:54- We're able to talk to disabled - people and to their groups...
0:03:55 > 0:03:58- ..and get them online - and using the Internet.
0:03:58 > 0:04:03- According to a survey, 40% - of disabled people aren't online.
0:04:04 > 0:04:09- That's why it's important - for this project to happen.
0:04:09 > 0:04:12- As a disabled person myself...
0:04:13 > 0:04:18- ..I know the obstacles - that people have to face.
0:04:20 > 0:04:25- I'm glad to work here - as part of the organization...
0:04:25 > 0:04:30- ..and fight to try - to break the barriers.
0:04:31 > 0:04:33- After finishing work...
0:04:33 > 0:04:37- ..Tina has invited me - to her flat in the Bay for a chat.
0:04:39 > 0:04:43- It's a lovely flat. - How long have you lived here?
0:04:43 > 0:04:47- I moved here - about three and half years ago.
0:04:47 > 0:04:51- Does someone come in - to help you occasionally?
0:04:51 > 0:04:56- A carer comes on Tuesday - and Wednesday evenings...
0:04:56 > 0:04:58- ..to help me go to the gym.
0:04:59 > 0:05:03- When I'm in the gym, - she can help the trainer...
0:05:03 > 0:05:07- ..with things like - getting me on the equipment.
0:05:08 > 0:05:13- I also have someone who helps - a few mornings and nights.
0:05:14 > 0:05:16- For example, if it rains...
0:05:16 > 0:05:19- ..they help me - get in the car faster.
0:05:20 > 0:05:24- As well as the gym, - Tina is very fond of music.
0:05:25 > 0:05:28- She often goes to concerts.
0:05:28 > 0:05:32- Tell me about going to gigs - and festivals with the chair.
0:05:33 > 0:05:37- Have you had good experiences - or difficulties sometimes?
0:05:37 > 0:05:38- Not so far.
0:05:38 > 0:05:41- I think because I'm so laid-back...
0:05:42 > 0:05:45- ..my experiences have been alright.
0:05:47 > 0:05:50- If there are steps somewhere...
0:05:50 > 0:05:53- ..people will often - just carry me in.
0:05:54 > 0:05:58- It's probably - not the right thing to do.
0:05:58 > 0:06:01- There should be access...
0:06:01 > 0:06:06- ..for able-bodied - and disabled people to go anywhere.
0:06:07 > 0:06:09- But if I want to get into a gig...
0:06:10 > 0:06:15- ..if I really want - to see someone singing live...
0:06:15 > 0:06:19- ..if someone even throws me in, - I'm happy.
0:06:19 > 0:06:23- I'll go in to see them - any way I can.
0:06:24 > 0:06:27- Tina hasn't always - had to use a wheelchair.
0:06:28 > 0:06:30- I got the diagnosis when I was 16.
0:06:31 > 0:06:34- Before that, - I was able to walk and run.
0:06:37 > 0:06:43- When I walked round school - during break with my friends...
0:06:44 > 0:06:49- ..I noticed - that I was bumping into them.
0:06:51 > 0:06:54- When I was 16, I laughed about it.
0:06:55 > 0:06:57- My friends said, "Walk straight!"
0:06:57 > 0:07:01- I'd laugh, not really - understanding what was wrong.
0:07:02 > 0:07:07- When I closed my eyes - for prayers in assembly...
0:07:08 > 0:07:10- ..I lost my balance.
0:07:11 > 0:07:14- I went to the doctor's for tests.
0:07:16 > 0:07:22- Six months later, I found out - that I had Friedreich's Ataxia.
0:07:24 > 0:07:26- After university...
0:07:26 > 0:07:31- ..I decided it would be better - to give in and use the chair.
0:07:32 > 0:07:38- I realized it hadn't actually - made me a disabled person.
0:07:40 > 0:07:42- It gave me more freedom.
0:07:43 > 0:07:45- I'd reached the point...
0:07:45 > 0:07:50- ..that I didn't enjoy shopping - or going out for a drink...
0:07:52 > 0:07:54- ..because I lost my balance so much.
0:07:54 > 0:07:57- I had pains in my knee.
0:07:58 > 0:08:00- Once I gave in to the wheelchair...
0:08:00 > 0:08:03- ..I was free to do anything.
0:08:04 > 0:08:06- What exactly is Friedreich's Ataxia?
0:08:07 > 0:08:09- It's a neurological condition.
0:08:09 > 0:08:12- It affects the nervous system.
0:08:12 > 0:08:17- If you think about it, the nervous - system goes throughout the body.
0:08:17 > 0:08:19- So it affects the legs, balance...
0:08:19 > 0:08:21- ..co-ordination.
0:08:22 > 0:08:25- If you offered me a Polo now...
0:08:26 > 0:08:29- ..it would take me some time - to pick it up...
0:08:29 > 0:08:32- ..because my co-ordination - is affected.
0:08:34 > 0:08:39- It can affect hearing, - sight and speech.
0:08:40 > 0:08:42- I'm conscious of my speech.
0:08:42 > 0:08:46- But I've been - to several conferences...
0:08:46 > 0:08:49- ..and met many people - with the same condition.
0:08:49 > 0:08:54- I know my speech - is much better than many others.
0:08:55 > 0:08:57- That keeps me positive.
0:08:58 > 0:09:03- Since working for Disability Wales, - Tina has adopted their thinking.
0:09:03 > 0:09:08- She feels that her surroundings, - not condition, make her disabled.
0:09:09 > 0:09:14- A person is disabled - because of society and attitudes...
0:09:14 > 0:09:18- ..and difficulties such as access.
0:09:19 > 0:09:22- That makes me think...
0:09:22 > 0:09:25- ..yes, keep on living.
0:09:26 > 0:09:30- The problem isn't the fact - that I have Ataxia.
0:09:31 > 0:09:34- The problem - is that society is as it is.
0:09:35 > 0:09:40- If I had access to every shop, - pub or whatever...
0:09:44 > 0:09:49- ..being in a wheelchair - wouldn't be a problem.
0:09:53 > 0:09:58- Tina and her friends are going - to a rowing centre in Llandysul...
0:09:58 > 0:10:01- ..to practise their kayaking skills.
0:10:02 > 0:10:03- You're strangling me!
0:10:03 > 0:10:04- You're strangling me!- - Sorry!
0:10:06 > 0:10:11- A year ago, Sarah and I - decided to buy a kayak.
0:10:12 > 0:10:14- We've got a double seat on it.
0:10:16 > 0:10:21- In three months, we're doing - a challenge to raise money.
0:10:23 > 0:10:25- We have to paddle for 30 miles.
0:10:26 > 0:10:28- I can't get her feet in!
0:10:31 > 0:10:32- We're in!
0:10:32 > 0:10:35- We're raising money for Ataxia.
0:10:42 > 0:10:43- OK?
0:10:45 > 0:10:48- Since I've had the condition...
0:10:48 > 0:10:50- ..I think I'm more sporty...
0:10:51 > 0:10:53- ..probably to fight it.
0:10:54 > 0:10:55- Ooh!
0:10:55 > 0:10:56- Whoa!
0:10:57 > 0:11:01- I've always liked - doing outdoorsy things.
0:11:01 > 0:11:04- My friends enjoy it too.
0:11:04 > 0:11:09- When I see them doing that kind - of thing, I want to join in too.
0:11:12 > 0:11:15- I think that's why - we decided on the kayak.
0:11:15 > 0:11:18- It's something I can do.
0:11:18 > 0:11:21- I don't have to use my legs.
0:11:27 > 0:11:27- .
0:11:31 > 0:11:31- Subtitles
0:11:31 > 0:11:33- Subtitles- - Subtitles
0:11:33 > 0:11:35- At Crundale Hall, Pembrokeshire...
0:11:36 > 0:11:40- ..Tina is going to speak - at a conference for disabled people.
0:11:40 > 0:11:42- I've come to support her.
0:11:43 > 0:11:49- I've come to talk about the project - I'm running with Disability Wales.
0:11:51 > 0:11:54- I'm trying to get - more disabled people...
0:11:54 > 0:11:58- ..to want to go online - and use a computer.
0:12:01 > 0:12:03- We have this event today.
0:12:03 > 0:12:07- I thought it was - a perfect opportunity...
0:12:08 > 0:12:10- ..for me to talk to everyone...
0:12:10 > 0:12:13- ..and try to get them all on board.
0:12:13 > 0:12:17- Sometimes, I get - a little nervous beforehand.
0:12:17 > 0:12:21- But once I'm in front of everyone, - I just open my mouth...
0:12:21 > 0:12:23- ..and it all comes out.
0:12:23 > 0:12:28- I like to go out - and meet different people.
0:12:28 > 0:12:31- It makes the work more interesting.
0:12:31 > 0:12:36- Technology is changing - and evolving so quickly.
0:12:36 > 0:12:39- We're all forced - to keep up with it...
0:12:39 > 0:12:44- ..especially now with Universal - Credit they're rolling out soon.
0:12:45 > 0:12:48- We're all going - to be phased to claim online.
0:12:49 > 0:12:53- So it's important - that we all work together...
0:12:53 > 0:12:57- ..and try to get online - before this is rolled out.
0:13:02 > 0:13:04- After working hard all week...
0:13:05 > 0:13:08- ..a favourite weekend activity - for Tina...
0:13:09 > 0:13:13- ..is watching the rugby - at Parc Y Scarlets with her father.
0:13:17 > 0:13:19- Dad and I have season tickets.
0:13:20 > 0:13:23- We've had them for about ten years.
0:13:24 > 0:13:27- After I finished college, - Dad asked...
0:13:27 > 0:13:30- .."Do you want to go - to a match this weekend?"
0:13:31 > 0:13:33- So we bought them.
0:13:33 > 0:13:37- There's a match - almost every fortnight.
0:13:38 > 0:13:41- It's something to do - on weekends with Dad.
0:13:43 > 0:13:45- Mam sometimes comes too.
0:13:46 > 0:13:49- I went to my first match - when I was 13.
0:13:50 > 0:13:52- I've been hooked ever since.
0:13:53 > 0:13:55- Hello! Are you alright?
0:13:55 > 0:13:56- Hello.
0:13:56 > 0:13:59- You haven't been for a while.
0:13:59 > 0:14:02- We usually turn up - when they kick off.
0:14:04 > 0:14:05- But as you see...
0:14:06 > 0:14:08- ..we're actually on time today.
0:14:08 > 0:14:10- It's a change for us.
0:14:12 > 0:14:16- It's great here, with room - for disabled people to sit.
0:14:17 > 0:14:21- The view is better - than anywhere in the stadium.
0:14:21 > 0:14:22- So I'm happy.
0:14:23 > 0:14:27- While they enjoy the game, - I meet Tina's mother...
0:14:27 > 0:14:30- ..to find out how the family - dealt with the news...
0:14:31 > 0:14:34- ..that Tina has a condition - that will shorten her life.
0:14:35 > 0:14:36- Hello. How are you?
0:14:36 > 0:14:37- Hello. How are you?- - Come in.
0:14:37 > 0:14:38- Thanks. Nice to meet you.
0:14:38 > 0:14:39- Thanks. Nice to meet you.- - And you too.
0:14:41 > 0:14:47- She started to get rather shaky - and clumsy when she walked.
0:14:48 > 0:14:50- She was sent for a CT brain scan.
0:14:52 > 0:14:54- That came back fine.
0:14:54 > 0:14:56- There was nothing wrong there.
0:14:57 > 0:15:00- Then she was sent to a specialist.
0:15:03 > 0:15:05- He told her to walk in front of him.
0:15:05 > 0:15:09- He said that he thought - he knew what was wrong.
0:15:09 > 0:15:13- "I can tell you what I think it is - and there's no cure."
0:15:14 > 0:15:16- I didn't know what to say.
0:15:17 > 0:15:21- It was a shock to hear that, - with Tina looking at me.
0:15:22 > 0:15:25- I couldn't ask him anything.
0:15:27 > 0:15:30- He said Friedreich's Ataxia.
0:15:30 > 0:15:32- I'd never heard of it.
0:15:33 > 0:15:36- We read about it.
0:15:37 > 0:15:39- Things didn't look good.
0:15:41 > 0:15:43- We just hoped it wasn't that.
0:15:44 > 0:15:47- How did Tina cope - with the diagnosis?
0:15:49 > 0:15:51- I remember telling her.
0:15:51 > 0:15:53- She broke down and cried.
0:15:55 > 0:15:57- We were all very upset.
0:15:59 > 0:16:01- But she has coped very well.
0:16:02 > 0:16:05- She carried on.
0:16:05 > 0:16:07- I don't think she looked it up.
0:16:07 > 0:16:11- She didn't want - to talk about it much.
0:16:11 > 0:16:14- She just wanted to keep going.
0:16:15 > 0:16:17- We said, "Carry on with your life."
0:16:17 > 0:16:20- We couldn't say that everything - would be fine...
0:16:21 > 0:16:22- ..because we weren't sure.
0:16:23 > 0:16:24- But she has coped very well.
0:16:26 > 0:16:29- She has difficult days, - as we all do.
0:16:29 > 0:16:34- But she has every right - to feel low at times, as we all do.
0:16:35 > 0:16:38- Do you worry about her?
0:16:38 > 0:16:41- Yes, we worry about her - all the time.
0:16:41 > 0:16:44- Everyone worries - about their children.
0:16:45 > 0:16:46- We do worry.
0:16:46 > 0:16:51- She's on my mind first thing in - the morning and last thing at night.
0:16:52 > 0:16:57- But we're there to support her, - whatever she wants to do.
0:16:58 > 0:17:00- It's Tina's birthday soon.
0:17:00 > 0:17:03- Is it a special milestone for you?
0:17:03 > 0:17:05- Yes, it is important...
0:17:07 > 0:17:09- ..because of her illness.
0:17:09 > 0:17:12- We don't know - what's round the corner.
0:17:12 > 0:17:15- None of us know - what's round the corner.
0:17:15 > 0:17:17- We try to celebrate.
0:17:17 > 0:17:19- Tina enjoys herself anyway.
0:17:20 > 0:17:23- It's any excuse - to celebrate for Tina!
0:17:27 > 0:17:28- The big day is here.
0:17:29 > 0:17:33- Tina has been busy - preparing various activities...
0:17:33 > 0:17:35- ..to celebrate this important day.
0:17:37 > 0:17:40- We're going out in Cardiff...
0:17:41 > 0:17:43- ..on a mother and daughter day.
0:17:44 > 0:17:46- We're celebrating my birthday too.
0:17:47 > 0:17:49- We have a treasure hunt later.
0:17:51 > 0:17:55- We'll have a few drinks - throughout the day.
0:17:56 > 0:18:01- I don't think anyone - will be sober by the end.
0:18:02 > 0:18:07- A lot of my friends - see it as just another year.
0:18:09 > 0:18:13- But I see a birthday - as something to celebrate.
0:18:14 > 0:18:16- It's important to me.
0:18:17 > 0:18:19- Next year, I'll be 30.
0:18:19 > 0:18:21- It'll be a milestone for me.
0:18:25 > 0:18:26- With Ataxia...
0:18:28 > 0:18:30- ..a lot of people don't see 30.
0:18:30 > 0:18:32- So it's a big thing.
0:18:33 > 0:18:36- I think it's a big deal - for my mother.
0:18:38 > 0:18:40- I've spoken to her about it.
0:18:41 > 0:18:43- Maybe she sees it as another day.
0:18:44 > 0:18:49- But maybe she wouldn't tell me - if she saw it as something bigger.
0:18:49 > 0:18:53- It's not something - one really wants to talks about.
0:18:54 > 0:18:59- Well done, you made it to 30. - You haven't died yet!
0:19:05 > 0:19:06- Here we go!
0:19:07 > 0:19:09- We'll enjoy ourselves!
0:19:10 > 0:19:15- The girls have reached Cardiff - and head for the first pub.
0:19:20 > 0:19:23- We've known Tina - since we were small.
0:19:23 > 0:19:27- We went to school in Pontyberem. - Our garden was next to theirs.
0:19:28 > 0:19:29- They lived behind us.
0:19:29 > 0:19:31- They lived behind us.- - We jumped over the fence to play.
0:19:32 > 0:19:36- My sister's a physiotherapist - and I do sports massage.
0:19:36 > 0:19:41- We try to get Tina to strengthen - her muscles, to help her movement.
0:19:41 > 0:19:43- We've done that over the years.
0:19:44 > 0:19:48- Now we just help, say if she wants - to get out of the chair.
0:19:49 > 0:19:51- We're quite safe, so she trusts us.
0:19:51 > 0:19:54- We don't drink a lot when we go out.
0:19:54 > 0:19:56- We're the designated pushers!
0:19:57 > 0:20:02- Everyone splits up into teams, - mothers against daughters...
0:20:02 > 0:20:05- ..and start the treasure hunt - organized by Tina.
0:20:06 > 0:20:07- So, game on!
0:20:08 > 0:20:09- Game on!
0:20:10 > 0:20:14- But this isn't - an ordinary treasure hunt.
0:20:15 > 0:20:17- Smile!
0:20:19 > 0:20:22- Hang on, how do you do it - in one throw?
0:20:24 > 0:20:25- After three!
0:20:28 > 0:20:31- I've come to Cardiff - to join in the celebrations.
0:20:31 > 0:20:34- But as the only man - with 16 women...
0:20:35 > 0:20:39- ..I've brought my girlfriend Chloe - along to look after me.
0:20:41 > 0:20:42- Happy birthday!
0:20:42 > 0:20:43- Hello!
0:20:45 > 0:20:46- Thank you!
0:20:46 > 0:20:48- This is Chloe.
0:20:48 > 0:20:49- Hi!
0:20:49 > 0:20:51- Are you having a good day?
0:20:51 > 0:20:52- Are you having a good day?- - It's a great day.
0:20:52 > 0:20:56- We're halfway through - the treasure hunt.
0:20:57 > 0:21:00- We're having a break.
0:21:00 > 0:21:02- Is the competition going well?
0:21:03 > 0:21:04- Yes, it's game on.
0:21:05 > 0:21:07- We have to beat the mothers.
0:21:11 > 0:21:12- This is my best friend.
0:21:12 > 0:21:13- This is my best friend.- - Hello, how are you?
0:21:13 > 0:21:15- Nice to meet you.
0:21:15 > 0:21:19- Sarah and I have been friends - since we were four.
0:21:20 > 0:21:23- Basically, she can't get rid of me!
0:21:24 > 0:21:28- I think I've celebrated - every birthday with Tina...
0:21:29 > 0:21:31- ..since we were three years old.
0:21:31 > 0:21:33- Since we were three.
0:21:33 > 0:21:36- Tina enjoys celebrating anything.
0:21:36 > 0:21:41- Tina would celebrate opening - a bottle of pop if she could.
0:21:42 > 0:21:44- Because we're not sure...
0:21:44 > 0:21:48- ..how many birthdays - any of us have ahead of us...
0:21:49 > 0:21:51- ..birthdays are important.
0:21:51 > 0:21:55- She feels that every birthday - is an achievement.
0:21:55 > 0:21:57- That she's reached a goal.
0:21:58 > 0:22:00- Every birthday is priceless.
0:22:02 > 0:22:06- We have one more challenge - in the treasure hunt...
0:22:07 > 0:22:09- ..before relaxing.
0:22:10 > 0:22:12- The cancan - and a picture as a memento.
0:22:20 > 0:22:21- It's a bit of fun!
0:22:23 > 0:22:28- Tina and her family's positive - attitude have changed my outlook.
0:22:28 > 0:22:33- Over time, the health of people with - Friedreich's Ataxia deteriorates.
0:22:33 > 0:22:37- Tina appreciates and enjoys - every second of her life.
0:22:37 > 0:22:41- We should all enjoy life - and appreciate what we have.
0:22:41 > 0:22:46- The way she copes with her condition - shows her strong character...
0:22:46 > 0:22:51- ..her love for life and appreciation - of what is important.
0:23:06 > 0:23:08- S4C Subtitles by Gwead
0:23:08 > 0:23:08- .