Full Text Of Lord Ashley Memorial Lecture

Lord Ashley Memorial Lecture - July 1st 2013

Thank you, My Lords, Ladies, Gentleman and Colleagues - It is a very great pleasure to be here tonight. I would like to thank Mr Speaker for his hospitality, and also the family of Lord Ashley for inviting me to speak tonight. It truly is an honour.

I didn't know Jack well but he had a massive influence on my early life. He was the first 'real' disabled person I saw on the television. I saw his campaigning work and how he challenged people's perceptions of impairment in a positive way.

Even as a child, I could see that some people tried to treat him differently, but although I obviously had a different impairment, I knew I shouldn't be treated differently from the wider population.

Even now I smile when we say 'treat disabled people differently' what we mean is discriminatebut we shy away from that. The reality is, from the amount of mail I receive, is that disabled people are being discriminated against, they're still being spat at in the street, or excluded from work. The best hope I have is that they are just 'treated differently' I am guilty as anyone of tempering what I say, to achieve the longer term aim of equality.

My parents were always open with me that I was going to have to deal with people who would consider that I was less capable because I was disabled, but they also told me that I should never let it stand in the way of what I wanted to achieve. What I admired about Jack was his persistence, his manner, his humour and his dignity.

I met Jack in the House of Lords, very early on in my time there. Those first few weeks are tough and challenging, and I remember having cups of tea with people that I had grown up admiring and despairing of in equal numbers. I remember thinking 'oh wow, that's him'. He approached me with a very simple 'Hello Tanni, I'm Jack Ashley' and I was very dignified and said "I know!" It is one of those times you look back and wish you had said something more intelligent!

We had some shared experiences. We were both on "This is Your Life" , although not together. There is nothing like "This is Your Life" for digging out family members and friends who you barely remember, who think they are the ones who moulded you. If ever there was a person who richly deserved the title, the noble Lord, it was Jack.

When I say that Jack was the first 'real' disabled person I saw on TV, it was because all the other disabled' people I saw were actually actors, playing a part. They got the nuances of impairment wrong; none of them were disabled, just non-disabled actors playing what they thought disabled people were like. OK I know that the idiosyncrasies of filling in benefit forms is not going to make thrilling story lines, but some of the things I have witnessed recently would be worthy of a soap opera. I would like to say, oh how times have changed in the media world, but we are still not quite there yet. I knew it was wrong, because their experience of having a disability wasn't mine. They weren't treated the way I was treated. These were my really my only role models of what life might be like. Jack was the closest thing to reality that I wanted to experience. I remember watching Crossroads and the character Sandy Richardson, who seemed to randomly be in a wheelchair or walking on crutches, depending on the inaccessibility of 'hotel'. How wonderfully convenient, wouldn't it be great if life were like that? It turns out that his character was meant to have been injured in a car crash and then go on to make a full recovery, until someone pointed out that wouldn't happen in real life, and so the first disabled character was born.

I realised early on that bad people in films / history were quite often disabled. Richard III, Dr No, Darth Vader, Chris Tate (from Emmerdale) and of course the Daleks, although now they can fly in the most recent incarnations, and steps are no longer a barrier, I am quite envious of them. Then of course there was Ironside. The first good guy, who always caught the bad people, and he had the best van ever , with a tail lift. I don't think he drove himself - that would be a step too far. I'd never thought about driving, but was just a little disappointed to realise that what people expected me to drive was one of those blue plastic cars. I remember telling my parents I would rather get on a bus… the naivety of not realising that public transport at that time was absolutely appalling if you were in a chair. Oh how times have changed, or maybe not?

It makes me think of the number of times people have asked me if I can walk. It's as if my impairment will go away if I just tried a little bit harder. Just last year, someone asked me whether I had 'really' tried to walk! A few years ago when an airline lost my chair, one of the assistants asked whether if he held me under my arms I would like to try and walk. Uuum, no. If I had told him what I really thought then I would have had a chip on my shoulder.

For a long time I thought about my career being in different blocks or phases but the further I move away from the competitive side of it is easier to see that it is a continuous pathway. I've been presented with many opportunities in my life but journalists like to keep things in boxes. The three questions I am always asked are "You're how old?" As an athlete you were considered old at 30, now in the Lords, I am back to being young again! "How hard do you train" or my favourite" When did you decide you wanted to go in the House of Lords?" As if this was part of the athlete retirement package! Well in sport you have to create your own pathway and it is just like that in the House of Lords. If you dig just a little beneath the surface, you can see that my life in sport and Disability Rights has been linked. The things that I was fighting for as an athlete are not that different from what I want now.

While I competed I sat on the National Disability Council (I was 25 and really had no idea what I was doing), various sports councils, did a politics degree (although I said I would never go in to politics as it was for losers, I take that back!), I realised very early on that if I won gold medals it gave me a different platform to speak on. I think I was also lucky that I was born in 1969. I had Spina Bifida. My Mum later told me that one of her doctor's had told her that if I had been born a few years earlier I would have been taken away and not fed. It didn't stop various doctors suggesting all sorts of experimental surgery on me which we declined because none of it was going to help. It didn't matter because I couldn't walk anyway. I have too many friends who were experimented on.

My parents already had one daughter, my sister Sian , who was born with a heart condition which needed to be operated on immediately. It was then discovered that she had also been born with dislocated hips, which meant 18 months in a frog plaster. My arrival on the scene came with no real drama I was just in an incubator for a day or so I wasn't treated with much fanfare. I was definitely child number 2, thank goodness. My parents didn't really know what Spina Bifida was, because it wasn't discussed. Apparently my mother asked whether I would be able to have children. She later told me that she had no idea why she asked it, but felt that she had to ask something. The ability of women to have children is still such a major defining position on femininity. Years later when I was

pregnant, and rang up to tell her, she was shocked. I asked whether it related back to my birth, she told me that she just didn't think I had the patience to be a mother! I was told by one enlightened person that people 'like me' shouldn't have children. I presumed she meant as a wheelchair user as opposed to me being Welsh! I say you 'have to laugh', but in all honesty, you shouldn't have to. You shouldn't have to deal with patronising people.

My grandparents struggled with my condition. I think more than one person pointed out that with both Sian and myself 'having problems' my parents weren't very good at having children. To my maternal Grandmother who was born in 1900, disability meant something entirely different to her. It was something to be embarrassed about. She didn't want to tell anyone, because of how it reflected back on the family, as if she could have done something about it. Because I could walk a little when I started school, I got in to what we now call mainstream school. Although back then, things were simple, we just called it school. My parents didn't know I was meant to go somewhere else, and the Head teacher didn't tell them. My walking deteriorated and by the age of 7 I was paralysed. My spine had collapsed and severed my spinal cord. There wasn't any pain. I didn't miss any school. There was no trauma. There was no drama. I thought it was cool that my legs no longer hurt when I fell down and if I cut my legs crawling over rocks on holiday it didn't matter. My parents were told that I would be better off walking with callipers as I would look more 'normal'. I remember one doctor asking me if I knew what a pressure sore was, I didn't, he showed me a picture, and told me if I got one I would die and it would be slow and painful. I have never had one. I feel proud that I haven't, in this instance, cost the NHS hundreds of thousands of pounds.

There were early experiences that heavily influenced me. I only remember one child being slightly horrible to me at a youth club, and called me 'limpy legs'. People who knew me were great, and didn't discriminate against me but those who didn't know me talked down to me. Even at 7 I recognised it, and fought against it. My parents didn't believe that my life should be different and my father told me that 'education gave me choices' Dad was an architect. He didn't want to make the house wheelchair accessible. He, like many, thought ramps generally weren't aesthetically pleasing. he thought concrete was unpleasant and I still agree with him. The only thing I probably dislike more is tactile paving, and badly constructed dropped kerbs that are more dangerous than not having them. But of course, all impairment groups have the same problems, so wehave to be happy with them . Just because I am disabled it doesn't mean I am willing to accept ugly things around me. Why should we have to 'make do' or somehow be grateful because we have something that makes our life a little easier?

I was going in to an inaccessible building to pick my daughter up from a school event last week and the organiser was putting a ramp down. Not very pretty but it meant I could get inside. One of the Mum's said to me 'having special treatment are we?'. She laughed. She thought she was being clever or funny. I just had the words 'patronising cow' screaming through my head. I wonder what the reaction would be if I said 'aren't you lucky because they let people like you in the building'. If I had a pound for everyone in the house of Lords who asked 'Are you in a race' I could probably solve the economic crisis! Now I've challenged Dame Anne Begg a couple of times, but she isn't up for it! My wheelchair doesn't define who I am, but it is important to me that it fits in with me. I am now in my stripped titanium and carbon fibre phase. I did away with my light up wheels when I came here.

The real reason that my parents didn't adapt the house is that they didn't want to make the family home only place I could live. Although years later Dad rephrased it and said that he didn't want me to live at home forever! These days we would say that there was a different spin on it.

Sitting in a Doctor's surgery in the early 80′s I noticed a poster on the wall. It was advertising the International Year of Disabled Persons. And it listed, in an aspirational way, all the rights that I might one day get. They were

- to take part fully in the life and development of their societies,

- enjoy living conditions equal to those of other citizens,

- and have an equal share in improved conditions resulting from socio-economic development.

What really shocked me was I thought I had those rights, they were not aspirations and here was a poster telling me I could aspire to them. My Mum told me to ignore it as I could have whatever rights I wanted.

Politics influenced my life long before sport. When I was due to go to high school we all thought that I would follow my sister. Suddenly the head teacher of Sian's school wrote to my parents and told them that they 'didn't take' people like me. My parents read the right newspapers, and knew that there was something coming out called the Warnock Report. It was 1981.My father got hold of a copy of it, and ultimately threatened to sue the Secretary of State for Wales over my right to be educated in mainstream school. Dad wrote lots of letters. He made himself a real pain in the neck. I loved his letters. With a few caveats I was allowed an education. There is a certain irony that I am here tonight talking about this, when tomorrow in the House of Lords we have the second reading debate on the Children and Families Bill which will lead some families to be fighting for the same thing that my family did 30 years ago.

I think it is really tough on parents of disabled children these days. They have to be experts in every area that effects their child's life. They are told that they have 'choice'. I find that an interesting use of words. I am not convinced that it means that they have more, they just told that they have. Jack has been quoted as saying that you should not accept 'the brush off if you know you are right'. My dad knew he was right, and the best place for me was not special education.

In another twist, which would be perfect in a movie, Mary Warnock tabled a debate on the Special Education, which was to mark the 30 years since her report, and I was able to sit in the Chamber and say that thanks to her, I ultimately ended up in the House of Lords.

I have lots of views on the changes that are coming through the recent legislation. We can spend as much time as we want debating what poverty really means, and then trying to work out which side various groups are on, but that feels a bit too much like spin. If you believe some by about 2020 just about everyone on the country will be on DLA. Even in mainstream school and doing well academically, I was sent off to have my IQ measured every year. I had to see a specialist careers adviser who told me not to be so ambitious in wanting to go to University, that I should just go to secretarial college and I could be taught how to answer a phone. I replied that I already knew that and he give me a detention! Actually my first job was answering a phone, but we ignore that!

Sport gave me some resilience to deal with these people. Winning and losing in a public environment, and everything that comes with it although not pleasant, toughens you up. Even the most aggressive email I have had over my stance on Welfare Reform or Assisted Suicide is not as bad as I have been told to my face in sport. In the early 1990′s I had this light bulb moment. I heard about the medical and social model of disability. The world made sense. It made me realise that it wasn't my fault. I blamed architects, including dad…. They were barriers not hurdles. I really don't mind if people don't like me because of me, but I hate it if it is because of my wheelchair.

Discrimination was there. The one that still gets me is when people count my money back in to my hand and tell me not to lose it. My husband is always daring me to throw it on the floor. When I was pregnant I had medical professional ask me if I couldn't cope would I either mistreat or put my baby or put it up for adoption. My response was that I would hire a nanny.

I still haven't figured out a way to deal with it. I don't want to shout back, because I know that people will think I have a chip on my shoulder . I do think it's funny that when I do speak out, people think that my volume button is at full blast. I usually think it is about 2 out of 10. When I grow up I want to be that women in Jenny Joseph's poem. I already wear purple. Just once I would like to tell people what I think, but I know that the floodgates will open I will scream and not stop and that this isn't the right way. What I still want is change, not just to scream.

Going back to seeing real disabled people, the first time I saw a disabled athlete was in the 1980′s, a welsh wheelchair racer called Chris Hallam. He won the London marathon. He was edgy and bold and stuck two fingers up to the world. No one knew the word Paralympic because it wasn't really used until 1988.. They were the advantages of having special schools. The sporting opportunities it creates were positive. There were more girls competing back then than there are now although we must accept that the pattern of disability and impairment is changing, and this may improve. I see big changes, and this is where the disability rights and sport come together . Leading up to the 2012 Games there were several assumptions made by people on the edge of sport. One is that you could just turn up and you were selected. The second is the assumption is that every disabled person wants to be a Paralympian. A really good friend of mine, who hates sport with a passion, has been constantly asked if she is going to try out for the team. Generally the public understands what it takes to be an Olympian. It's talent and training, and it's boring and hard, and at times amazing. Why assume that an untalented, disabled person who doesn't want to train would be a Paralympian?

I am very protective of the word Paralympian. I know how much work it took me to get there. 25 years of training for about 20 minutes on a Paralympic Games track. I am not an Olympian although I competed 4 times in demonstration races. There is a tendency to use the word Paralympic to mean disability sport. We don't call everyone who goes for a run on a Sunday an Olympian. It probably tells us where we are in terms of understanding of disabled people doing sport. Also the language around disability in sport is interesting.

So, through my career, certainly in the early years , it was pretty tough to convince some people that what we were doing was real sport. And then on the other side, I had disability rights campaigners telling me that I was selling out, by trying to hide my impairment and pretend that I wasn't disabled. The term supercrip was coined. There have been many articles written on this and it is interesting because I felt I was stuck in the middle but didn't know which way to turn.It wasn't so much the athletes wanting to do that, but it was also how the media portrayed us. Certainly some of the media coverage was, and can still be, very patronising. They like to use words like adversity. What adversity did I face? None, I grew up in a middle class family in Cardiff, I was told that I was brave because I did a marathon. I tried to fend it off with a joke. There is nothing brave about doing 150 miles a week in training.

Last year the British Paralympic Association produced a document / guide on language. This was amazing. I have always believed that language is the dress of thought and if we can start to get this right we are moving in the right direction. Of course, impairment and how it is acquired can be an interesting part of the story, but it is not THE story. My husband broke his back in a cycling accident. That is a bit more dramatic than what happened to me, but it didn't change his life. Sometimes I get the impression that people want it to be a devastating experience for him, because they can then look at him differently. But the idea of supercrip left me in limbo. Not always being treated as an athlete on one side, and then being seen to deny my impairment on the other. I wanted to be treated like an athlete who just happened to use a wheelchair. I lost count of the times I compared myself to a cyclist. Just last week someone stopped me and said that 2012 was amazing and they had had tickets for the real olympics and well as the Paralympics. I don't think, or rather hoped that they didn't realise what they were saying. It has been a long battle for inclusion and we have a long way to go

I will be honest. The big reason I wanted the Olympics in London was because it would bring the Paralympics. When we were in Singapore, bidding for the Games, Tessa Jowell asked me if I wanted her to say the 60 days of the Games - I said no. I would have loved to have been in a position where I could say yes. We were bidding to the IOC for the Olympics - the Paralympics would come with that. Understanding the field of play, is as important in sport as it is in politics. 2012 was amazing. So much came together, and people are still talking about the Paralympics. The issue we have to deal with now is Legacy. It is slightly strange that at the same time disability hate crime figures are the worst they have ever been. It means so many different things to different people. It can be the main stadium, sports participation, the Gamesmakers, actually it can be whatever you want it to be. For me it was the chance to change part of the conversation.

The organising committee did some amazing work on diversity and inclusion. As employers they brought lots of disabled people in to the building. About 2 and a half per cent of the staff are disabled, but with an upward trend. It is about constantly pushing those barriers. I had a letter about a month afterwards from a little boy who wrote and told me how amazed he was by everything and he had watched the amputee races, and it had changed his life. He told me that he wanted to run in the Paralympics, but his Mum had told him that he couldn't have a prosthetic leg for Christmas because they were too expensive. I was about to start ringing my friends to help club together, when I realised that the reason his mum said he couldn't have a leg was because he wasn't a leg amputee! The Games was never going to change the world, but we have a limited time left to use the fairy dust moments for positive influence.

Sport has changed, but there is still some tokenistic inclusion. I am frustrated by the sports who are happy to stick a picture of a disabled athlete on a poster, but beneath the surface do little to truly make a difference. As I have mentioned, athletes find it hard to challenge either that or how they are treated because of their contracts. It is more than the squad, it is about how works, and who manages the sport. I am tired of people wanting to be patted on the back for letting some of us through the back entrance, of which again we have to be grateful. Lottery funding was slow to kick in for disabled athletes, but is working well now. Some sports were told that they would only get money if they took on Paralympic side of the sport. Mind you I am not convinced that really changed much. There is a measurement tool in sport called the Equality standards. I want them to be more than a tick box exercise. And I want more than disabled people just being on the poster.

A friend who was a wheelchair user who applied for a job in sport was told that he didn't get it because he couldn't carry bags. I have never seen this in any job description for a coaching position. Also what does it say about some of our athletes? That they are too big to carry their own bags? How many will think they can't do it because they are disabled. The movement has changed. It used to be run by and for disabled people. A fellow athlete who competed in the same time period I did, towards the end of my career looked at me and said that he felt we were in a situation where it was two legs good, four wheels bad. And of course in sport there is always a hierarchy of what is cool to watch. In disability sport, at the moment I think leg amputees are perceived as the coolest because they look more like everyone else. In The Mirror last week Tony Parson's wrote how disabled people were going from Heroes to Scroungers in the space of a year. We are almost a year on from the Games, about the right time for the challenging stories to appear, that won't blight our memory of an amazing Games.

I started talking about it last year when we were debating the change in disability living allowance, because I wanted to make the story real. The people, who were going to be affected, were not all benefits scroungers, watching day time telly on their plasma screens, it was real disabled people. Making it about Paralympians brought it home. We don't know how many will be effected, but I am sure that with 600,000 not making the transition, there are likely to be one or two Paralympians in there.

I have to deal with very personal questions. I am asked how I go to the toilet, whether I had sex or IVF to have my child. I have received many letters from people who have told me that people they don't know have stopped them in the street and asked them if they are on DLA. We are still in a situation where we have to be grateful. If you are a Football supporter then it can be almost impossible to buy a season ticket for some grounds. You can be given your tickets, which means you have no way of complaining. I think this is appalling and is another thing on my list that I am looking at.

I sit on the Board of Transport for London, if there is one thing I would change it is the way of making sure we could turn up and go. Surely with modern technology we could do more. I am tired of being tutted at because I don't always know what I am doing 48 hours in advance. I have offered in the Chamber, and been taken up by one minister to go on a journey by public transport together. I am tired of having to plan what I drink 3 hours before boarding a train in case there is no accessible toilet. Or not being able to buy a drink because I should have a carer with me (I have to say my local train service is brilliant).

About three years ago we were at a tourist attraction in London, and I went to pay, which was challenging because the entrance was inaccessible, and I was told that there were already '3 of you lot in there' so they couldn't let any more in right now. My husband joked about Welsh people thinking we had rights. When we could go in, I queried the amount I was paying because it was too low and was told that my carer (ie husband) got in for free. Why? Because being my husband is so harrowing that he needs to be taken out for a day in London.

I was told by one airline that I couldn't fly with my daughter because I wasn't a responsible adult. But where we are is most disturbing because while these comments resonate with many people in the room, they tell a deeper story of where we are in British society. There were always people who will cheat the system. We see enough of that in sport. With people who cheat their classification system to try and get in to a more advantageous category. In sport means medals, money and publicity. There can be benefit in showing everything that you cannot do. I am unbelievably frustrated listening to talk that the new welfare system is going to be more simplistic, well perhaps if you have a PhD in it, or that we are going to save money. There is absolutely no sign of that. In a recent interview I was asked "how much medication was I on when I was competing?" The answer is none. I was then asked "how much medication I was currently on?". The answer is still none. When I also answered none to how much pain I was in I knew that we were going nowhere. That article was never published. There is too much confusion with being disabled and being sick.

I am sure there are some officials who think that I am being deliberately obtuse when I am filling out the new PIP forms in a briefing meeting. One of the questions was 'list the medical professional who can best describe your impairment'. The answer was none, because the last time I saw my doctor for an illness was back in 1996 when I had tonsillitis. I don't think my daughter standing on my foot and pulling my big toe nail out and a nurse saying I was being dramatic as I arrived in a wheelchair counts! You see it will never work having a philosophical argument about the effect of impairment. I find it interesting and challenging but if it doesn't fit neatly in to a box, an application form or assessment process we will never talk about it. I wonder when are we going to let disabled people out of the box?

The plan was that with the Welfare Reform Bill I was going to sit back and watch and learn, and get involved in a few people's amendments, but I have found that I am not that good at sitting back and shutting up. I have been accused of scaremongering recently, but I believe that people need to be aware of what these changes means, and think that they will be in the group of people with 'most needs'. We are in danger of entering the battle of the press release.

With the help of Citizens Advice, The Children's Society and Disability Rights UK last year, we launched a report called Holes in the Safety Net. In one day I did 26 interviews. The only time I have done near that number was when Glenn Hoddle said that disabled people had been evil in former lives, and Tiger Woods said he'd played the Augusta National in 2006 like a Spaz. I know that so much of politics is a sound-bite and doesn't make me proud, but I know how that part works.

Another frustration for me is that the promise that technology is going to save us all. 3 million disabled people do not have access to the internet, so how is moving everything online really going to help them?

I know we are in tough economic times, and I am tired of one side blaming the other. It has got better in recent months, but this 'banter' is not going to solve the problems we face. It would have been wonderful if we could have covered benefit appeals in the Welfare Reform Bill, not in the Legal Aid Bill, if we could cut the waste of mal administration in the system. It would be great if we could have a proper conversation about saving money not pushing it in to another budget line to worry about later. I only did one year of Economics at University, but that doesn't seem to make sense to me. The political rhetoric is tiring. I would like to see genuine political engagement with disabled people.

I wonder if it is time to have a debate on language and terminology. It is time to have a debate about the title Minister for disabled people?

I wonder what Jack would say if he were here now? I have been privileged in the House of Lords to learn from amazing people and I hope I will continue to learn from all their experience.

I hope some of the things I have learned in last few years have made me realise what is important. A few things made me realise that my work in Disability Rights is not worth trading any job in sport for. On a social media website this morning someone called Nicky Clark, a campaigner for Disability Rights, tweeted and said: Imagine if everyone who challenges stigma and bigotry, of all the things which you can't help, stood together. That would be pretty amazing, wouldn't it?Yes it would, and that is what we need to work for in the years ahead.

Thank you.