Wednesday, October 23, 2013

'I've always been able to push myself'

Ade Adepitan (right) is a British Paralympic basketball medal-winner, an actor and a filmmaker whose documentary Journey of My Lifetime took him back to his homeland of Nigeria to investigate why the country has yet to eradicate polio, which he contracted there as a toddler.

In an interview with The Guardian, Ade spoke about playing wheelchair basketball as a teen in London. “The disabled kids were just cooler, wilder, got up to crazy things,” he said. “We’d be out in the streets racing our chairs, playing basketball, travelling all over east London like a crew. It felt like I belonged.”
Ade’s older sister Omoyile has Down syndrome, so he has a unique perspective on physical and intellectual disability.
BLOOM: Your family moved from Nigeria to London when you were three for better prospects for you, but your family couldn't afford to bring your sister, Omoyile.
Ade Adepitan: They had to beg, borrow and steal everything they could just to get themselves over to the UK. At the time in the '70s if you didn’t have a British passport and you wanted residence you weren’t allowed to access the National Health System for two years.

So my parents had to pay for all of my health care for two years off their own back. And when you come from Nigeria, what people earn in the UK in a month they would hope to earn in a year. So my parents had to pay for braces, operations, sometimes going into hospital.
My dad and mom were qualified as teachers but because they were black, they couldn’t get professional jobs here when they came in the '70s. They had to work as cleaners and security guards, doing two to three jobs at a time while going to college in order to pay for me. My mother and father had to leave their whole family in Nigeria, and my older sister had to stay with my brother’s sister. She would have been four or five.

BLOOM: What was it like when Omoyile finally joined the family in London 10 years later?
Ade Adepitan: It was strange because I didn’t know she had Down syndrome. I left Nigeria when I was three and you don’t understand what Down syndrome is at that age. When she arrived I was a little bit confused. My parents were really happy but it was also quite difficult. I'd been the centre of attention because my younger brother and sister were still fairly little, and all of a sudden my sister comes from Nigeria and she was the centre of attention.

I was 13 and just starting to become a teenager and she was 14 or about to turn 15. It was like getting to know a stranger. Except because she had Down syndrome she had a mental age of about seven, so she was my older sister but she was actually younger than me. All of those things were complicated and difficult to understand.
BLOOM: How did your parents talk about disability?

Ade Adepitan: My parents were always of the philosophy that we should never really be talking about disability but talking about our ability. They weren't keen on me using a wheelchair and wanted me to walk all the time because they thought if I used the wheelchair it was like me giving up and taking a step backward. So in those terms it was quite difficult and you could maybe almost say my parents were a little backwards about disability.
But in the context of education my parents were very adamant that I go to a mainstream school and not a disability school and fought hard for me to go there. And even though my sister went to a special school, my dad fought hard for her to get a City & Guilds qualification in catering, which normally children with special needs don't get. My sister was one of the first kids in our area of the UK to get it, so my parents were very pushy in one respect.

BLOOM: Because of the stigma of intellectual disability was it challenging for you as a teenager to accept your sister?
Ade Adepitan: She was the first person with intellectual disability I'd ever met. You're a teenager and you go through that moody stage where it feels like the whole world is against you. Then this sister comes along and she needs a lot of attention. She was very skinny and there were worries about her health.

I was still going through ‘How do I get over the fact that I'm disabled and have a physical disability?’ and you want to fit in and you don't want to be different. I’d almost come to terms with that and I was thrown this curveball: now I’ve got a sister with an intellectual disability—that was like a double whammy for me.
BLOOM: In The Guardian you talked about how you learned how to walk with braces and how it was very important for your parents that you walked.

Ade Adepitan: For my parents who came from an African culture there was a lot of stigma associated with being in a wheelchair. Even in the UK in the 80s there was a lot of stigma. For my parents it was really important that I walked on callipers to my school which was a mile away.
It was a really hard walk and then my school was a massive school so getting to lessons was really difficult and there was no lift or ramp, so I had to climb the stairs, and I was carrying heavy books with me. By the end of a school day I was exhausted.

BLOOM: You've said that once you learned how to use your wheelchair it was freeing.
Ade Adepitan: When I finally started to use a wheelchair I was really embarrassed for my able-bodied friends to see me in it. But once I got over that it was a godsend and it changed my life. What the wheelchair gave me was independence.

A lot of people ask me why I got into sport, and the most important reason was that I knew if I was fit and strong, I wouldn't have to rely on anyone. When you’re disabled that’s one of the most important things: you have to be fit and strong because you’re not as physically able as other people, so you have to compensate for it with things like fitness.
I found once I was in a wheelchair I could travel long distances. Walking a mile would take the best part of half an hour, but I could push it in my wheelchair in five or six minutes. You can imagine the kind of independence that gives you. Suddenly I could travel anywhere.

BLOOM: Yet when I was in London recently I was struck by how inaccessible the tube and train system is.
Ade Adepitan: When you live in London and you have a disability you have to be almost like Indiana Jones. Every journey is like an adventure and you might as well be crossing through valleys and swimming rivers and stuff. Most of London’s transport system was built during the Second World War or just before and it's inaccessible and that in itself makes things very difficult. It could hold you back if you had a disability and you had to have a very strong mind set and be stubborn.

BLOOM: What was it like in other ways growing up with a physical disability?
Ade Adepitan: In the '80s when you were in a wheelchair or had any sort of disability people assumed you weren't as intelligent as other people and they overlooked you, they didn't really talk to you. Some people called you names like cripple.

For me I had the added thing of being one of the few black people in the UK. I was black and disabled and I felt like I was being hit on all sides. There were some days I felt like I didn’t want to go out of my house I was so pissed off at the way people acted around me. Just the fact of people staring some days made me feel really uncomfortable and I'd think why do I have to put up with this? It took a long time for me to embrace my disability. There was quite a period where I was ashamed.
BLOOM: You've spoken about how you joined a local basketball team that gave you a lot of confidence.

Ade Adepitan: This basketball team was set up by some physiotherapists and their philosophy was about independence. They wanted to make the young disabled individual as independent as possible as quickly as possible because they knew that in later life to be able to go out and have the confidence to travel around London and be yourself in front of people, and not be ashamed of it, you had to be built up and prepared.
When I joined this team I met a load of people my age or a little older and they were extremely confident. They were way more confident than my able-bodied friends, more adventurous and they took more risks. I thought they were cooler than my able-bodied friends.

BLOOM: You've said that the team gave you a feeling of belonging.
Ade Adepitan: Yes. As I started to play more sport I gained a lot more self-esteem. When you're good at something it boosts your confidence but it also gains you respect from your peers, especially your able-bodied peers. Rather than shying away from disability I started to be more overt about it. I'd go around in a wheelchair doing wheelies or talking about how I could be playing for the Great Britain team. My friends at school thought I was the cool one.

BLOOM: What was it like growing up with physical and intellectual disability in your family?
Ade Adepitan: My physical disability and having a sister with an intellectual disability made me so much more open-minded. It meant I also grew up a lot quicker than my peers. I certainly knew more about different groups of people.

Most of my friends would freely admit I was the only disabled person they knew and none of them knew anyone with an intellectual disability. It was no longer a shock for me to meet someone with a disability. I was able from a young age to look beyond people’s disabilities and see them as people. There's only so long you can dwell on why this person has such and such and after that it’s more about the person’s personality.

My sister may have an intellectual disability but she can be stubborn, she can be really intelligent, she can be really humorous and she can be quite annoying as well. People with disabilities have all the same traits as anyone else and that's what I see now more than I see the disability. That came from my upbringing.
BLOOM: Even within the disability community some disabilities seem to be valued more than others.

Ade Adepitan: One of the flaws of the human race is that we have to put everything in groups. It’s easier for us to label people and use a hierarchy in order to understand the world. I’m not like that and I think that’s because of my upbringing.
A lot of people think of intellectual disability as the lowest in the hierarchy of disabilities, but even within physical disability there’s a hierarchy. I think people who are deaf and blind probably don’t categorize themselves in the same position as someone who has a mobility impairment. And even within mobility impairments, at the top of the tree are the amputees and at the bottom are the quadriplegics.

It’s the weirdest and most horrible and most divisive part of the human psyche—our want to categorize everything.
BLOOM: What do you think about prenatal testing for Down syndrome?

Ade Adepitan: It’s something I’ve thought about for a while. I’ve wondered if my parents knew that I was going to be disabled, or my sister, would they have still had us, and I don’t know. I think it comes down to individual choice and I can’t make people’s decisions for them. I can say look, I’m disabled and my sister has an intellectual disability and our lives have been just as rich as any able-bodied person’s. Okay, there are complications, but there are complications in all walks of life, whether you’re able-bodied or disabled. I don’t think life is going to be as hard as [parents] think it will be with a child with a disability. And you’ll be enriched in different ways.
BLOOM: How can we make the world an accepting place for people with disabilities?

Ade Adepitan: Everything starts from what you learn as a youngster. All kids going to nursery or kindergarten should be mixing with kids with intellectual and physical disability from that young age.
Intolerance comes from ignorance and lack of knowledge and lack of knowledge comes from lack of experience. We need to mix all these different groups together from the age of three, four, five and stop separation. Separation is what creates intolerance.

BLOOM: There seems to be less inclusion of children with disabilities in classrooms in Britain.
Ade Adepitan: Over the last 10 to 15 years they’ve embarked on what we call mainstreaming and that’s putting kids with physical disabilities, and sometimes with intellectual disabilities, into mainstream schools. We’re probably nowhere near where we should be. Yet in some ways we’re quite advanced.

Last year when you saw the Paralympics our public really embraced it and had so much respect for people with disabilities. But our government doesn’t always reflect the attitudes and feelings of the general public and that may be because our government isn’t representative of the people they’re governing. There aren’t enough people within the government who have that direct experience with disability.
BLOOM: I understand you’re doing some work with the United Nations.

Ade Adepitan: I’m involved in trying to get disability and the rights of people with disabilities included in the UN’s Millennium Goals. They drew up a load of goals to do with improving sanitation and uplifting women in developing countries, but of eight goals they never made mention of disability.
A British politician is lobbying the UN to get disability on the agenda and she’s asked me to go on a trip to Uganda. Apparently Uganda has a very good record in the way it treats people with disabilities. We’re going over to see exactly what it is they’re doing and to see whether we can pass any of it on to other developing countries.

BLOOM: Tell us about the documentary you did on polio in Nigeria.
Ade Adepitan: I’ve been trying for years to do something about myself having polio and being born in Nigeria, but TV is a ruthless world and the execs didn’t think a show about polio was something that would be high on the ratings.

But after the Paralympics was such a success, Channel 4 put me in touch with some really cool directors who’d been doing some research on the problems with Nigeria’s vaccine campaign. Vaccinators had been shot dead by Islamist militants who claimed the vaccines were part of a Western ploy to sterilize children and wipe out the Muslim population. So the two things came together and it was magic.
BLOOM: What was the purpose of the film?

Ade Adepitan: We went back to find out a little about my backstory and why I got polio but also to find out the statistics and the story of polio there. There are only three countries where polio is still prevalent and Nigeria is one of them. Nigeria is the only country in Africa where polio is endemic. Why Nigeria? It’s a wealthy country in comparison to other African countries and it’s relatively stable, there’ no war going on there. So in comparison to its neighbours, we didn’t understand why.
BLOOM: What are the barriers to eradicating polio in Nigeria?

Ade Adepitan: Polio is prevalent predominately in the north of Nigeria where there’s a serious lack of education. A lot of people don’t go to school because of poverty and are illiterate. So they don’t have the knowledge to understand about polio and its impacts.
There are also people who are very nomadic in the northern parts. So it’s difficult for vaccinators to locate them. And polio is very contagious. One person with polio has the potential to infect 100 people yet 95 per cent of people who carry the polio virus will show no symptoms.

The sanitation system in Nigeria is terrible and that’s the way polio is transmitted: through fecal matter.
Back in 2003 there was a vicious rumour spread that polio was a Western ploy to control the Nigerian population, especially the Muslim population based in the north. And that the polio vaccine contained a contaminant that made children infertile. There was an uproar in northern Nigeria and the government suspended the polio campaign for nearly a year. The polio numbers shot back up and Nigeria has never recovered from that.

On our trip we met some people who refused to have their children vaccinated and there are still a lot of people who believe that the vaccine is part of what they call the white witches—part of the white evil medicine to depopulate northern Nigeria.  
There were some heartbreaking stories. We met one guy whose 18-month-old son wasn’t vaccinated and has polio. He can’t walk and crawls on all fours. In the part of Nigeria where he lives, you don’t want to look on the ground because it’s full of sewage and the stench is disgusting. This boy has to crawl through that stuff. 

He probably won’t go to school because the schools aren’t accessible, so he won’t be educated, his chances of getting a job are low and his life expectancy is low. His life is going to be very, very hard before he dies.
BLOOM: What would your life have been like if you’d stayed?

Ade Adepitan: My parents were pretty well educated, both were teachers and come from a family of teachers, so they would have worked really hard to make sure I had as good a life as possible. But my mom was alarmed and worried enough that she was willing to leave her family in Nigeria to come to the UK to give me a better life.  
There’s no comparison of how my life would have been. The opportunities that I’ve had since I’ve been in the UK—I work on TV, I’m a known face in the country, I’ve represented my country as an athlete, I’m respected despite having this disability, people talk about me rather than my disability and I’ve been able to be educated—all of these things would have been greatly reduced.

My sister who stayed in Nigeria really struggled at school. They didn’t know what Down syndrome was and for the first few years she was put in a mainstream school and the teachers treated her really badly because they didn’t understand her disability.
BLOOM: Tell me about Omoyile’s life now.

Ade Adepitan: She lives with my mom and she gets to do loads of different things. She’s really into drama and going to drama classes. She’s into art. She’s on a work training course to try to find a placement. She’s worked before but because of the economic problems in the UK she was let off. But now she’s doing some training and maybe will find a placement in a canteen or cafeteria or in a super store.

Omoyile’s a feisty character. She’s got a really strong personality, she’s got a sense of humour and she’s really mischievous. She’s opinionated as well and she’ll work someone out straight away.
BLOOM: You talked a lot about the importance of independence. What about people who have more significant disabilities who can’t have that level of independence? Can they still have rich lives?

Ade Adepitan: I’m sure they can. When I talk about independence it comes on many different levels and in different forms. Independence for me is something you would take for granted, like getting on public transit and going to the mall or to work. But for me it’s something I have to plan if I haven’t got my car.
For someone who is more restricted, they have to find independence within what they can do, and independence may be having the choice of who they have as their carer.

BLOOM: What advice would you give parents of kids with disabilities?
Ade Adepitan: You have to be open-minded, open to everything and surprise yourself. There are lots of things that my family—me and my mom and dad and sister—have achieved that we thought we’d never achieve.  When you start off trying to tackle these tasks, you get into thinking this might not work, but that’s not a reason not to try it.

Don’t be afraid to make mistakes. Mistakes are part and parcel of life and you learn a lot from those mistakes. You should go out there and surprise yourself.
There are things you may think your children can’t do and they might not be able to do it now, but with some work they probably can. In 20 years we’ll be looking at people with all kinds of disabilities and being surprised and amazed at what they can do and looking back and thinking 20 years ago how primitive we were to put so many boundaries on our kids.

BLOOM: Do you consider yourself a filmmaker or an elite athlete or an actor, given you’ve done all of the above?
Ade Adepitan: I don’t think of myself in one way. I’m doing such a variety of things. I’ve made four documentaries. The last one was in Mexico about mental health. It was a really intense documentary about the treatment of people with psychiatric disabilities in institutions, and also about a group of people who have psychiatric disabilities who have come together to fight for their rights.

I’ve been so lucky. If someone had told me 20 years ago when I was dreaming of being an international basketball player that I’d be able to go to the Paralympics and win medals I’d have struggled to believe it. If someone said that on top I’d forge a career on TV and be making quite tough and hard-hitting documentaries I would have thought they were taking the mickey out of me and having a laugh.
So many doors have opened. The United Nations has asked me to work with them; I’m asked to go into schools to do talks; I still play sport and have a team that we’re trying to set up to become a type of academy of excellence for disabled kids.

Life is short, we don’t know how long we’ve got and what will happen tomorrow. So it’s about maximizing your skill set and what I’ve learned and really enjoyed over the last 20 years is I’ve always been able to push myself and be at the edge of what I’m doing.
This year I made a documentary on changes in benefits for people with disabilities in the UK. That was incredible because that meant I had to tackle things with a journalistic brain. Every day was learning something new.

Then I went off to Nigeria to make the documentary about polio. It pushed me emotionally and was tough on my presenter skills. I had to learn how to interview people.

Following that I made a documentary in Cuba about athletes defecting. I speak a bit in Spanish but we decided that all the interviews would be done in Spanish. And it was the same in Mexico. I’m challenging myself. 

Photo from Channel 4.


This story is just incredible. What an inspiration and role model. Thank you so much for the depth of the interview, so many details and all of the great information. What a joy to read.