'Disabled people are only told what they can't do – sport changed that'

A recent Sport England study found that 75% of women are put off from being active due to a fear of judgement.

Strong Women is a weekly series that aims to normalise diversity in the world of sport and fitness and reaffirm the idea that women of any age, size, race and ability can be fit, strong and love their bodies.

There is a shocking lack of variation when it comes to women’s bodies in the media – and that can have an isolating effect.

By showcasing the wide range of different women who are achieving incredible things, we hope to empower and inspire underrepresented women.

Freya Levy has facioscapulohumeral muscular dystrophy (FSHD) – a genetic muscle disorder. At just 23, Freya has already competed for her country in wheelchair basketball, Para Ice Hockey and Wheelchair Rugby 7s.

What went through your mind when you were diagnosed with FSHD?

It’s difficult to put into words. I was 14 at the time and I think I found it harder in the sense that I knew it was going to be incredibly difficult for my family, but mostly my mum.

FSHD is a hereditary condition. My parents got tested to see if they were carriers before they had children and were told they weren’t, so it was a bit of a shock to us all.

From a young age I was very aware of the impact it would have on her more than me, especially as the ‘baby’ of the family – I’m the youngest.

It was very important to me to stay strong for her and show her that it wouldn’t stop me. My nan, uncle and aunt all have the condition, too, but it affects us all in different ways.

My siblings were amazing at the time. I owe them a lot and it brought the family closer in some ways. I’m just so grateful they never saw me any differently.

It was just never an issue – I’d still be told: ‘so what if you’re in a wheelchair, I’ll still smash you at Fifa’ or, ‘don’t think it’s getting you out of the washing up’ kind of thing.

I really appreciate how they helped me get through it, because there was nothing really to get through in their eyes. I was still their baby sister and we would still argue over who has control over the remote.

I remember asking the doctor if there was a cure, and he said no. I asked if it would ever get better, and he said no. I asked if he knew how bad it would get, and he said no. So I just stopped going back to the hospital.

I had already wasted my summer holidays sat in hospital waiting rooms and getting various tests, scans, being poked and prodded. I knew there was nothing they could do to stop it or slow it down, so I just decided to crack on with it and carry on being a teenager as best I could.

I didn’t see the point, because from a medical point of view there’s nothing very positive to come out of being told how it’s got worse or to be told how you’ve got weaker. I’m grateful my parents allowed me to make that decision and take control in my own way.

I feel lucky in the sense that the timing was perfect. I was studying for my GCSEs, so it was a great distraction. I could focus on my education and the here and now and just cross the bridges when I came to them.

I think it definitely gets harder to deal with later on. Beyond the diagnosis, there’s no notification to show that certain muscles have deteriorated or disappeared, you just kind of get daily reminders every time you go to do something, like reaching for the light switch and finding that you can’t do it like you could yesterday.

But again, you just find ways to adapt and overcome it, to the point I hadn’t realised how bad my condition had got. You just have to constantly find tips and tricks to get around daily tasks.

How did wheelchair basketball help you cope after your diagnosis?

I remember not long after I was diagnosed, I was playing football for my school and I just fell. I went to get up and fell again, and my friend just reached out their hand to help me up and said: ‘you’re done, dude.’

I knew it was going to be the last time I ever played football.

Having trialled with Arsenal Ladies FC three months before I was diagnosed, it was very difficult to come to terms with, but I also knew that it wasn’t going to be the last time I played sport. I went home that night, starting researching disability sport and came across wheelchair basketball.

I pestered my parents to take me to my local club, and at first I hated it. I had no idea how to work a wheelchair, let alone do that as well as control a basketball.

My teacher Mr Hawes pushed me to go back and try it again and I’ve never looked back.

At school I was getting used to ‘Freya? Oh, the one in the wheelchair’, but at basketball I was just Freya.

I learnt so much from the other players about living with a disability and how to get around and just deal with life, really. It had such a positive impact being surrounded by people just like me from day one.

What does sport bring to your life?

Sport has always been a huge part of mine and my family’s life.

After becoming disabled, finding disability sport helped me get through what was obviously an incredibly difficult time.

Sport and being an athlete has enabled me to be completely independent, travel the world, study at university and secure a dream job. Without sport, I genuinely have no idea what I’d be doing.

I’ve competed for Great Britain in Wheelchair Basketball, Para Ice Hockey and for England in Wheelchair Rugby 7s and internationally medalled in all three. I’ve been skiing, para-sailing, jet skiing, horse riding, rock-climbing, zip-lining, skydived and just achieved things I never thought was possible.

I definitely wouldn’t have been as successful if I wasn’t disabled. Sport just gives you that drive and the push to keep setting goals and to keep achieving them.

I’m supported by Michael Johnson as a young leader and mentor on his Young Leader program. I work with a sports charity Panathlon Challenge, which brings sport to over 20,000 disabled children a year.

It’s just an honour to be able to give back and see the difference sport can make to children who don’t have access to sporting opportunities because of their physical or learning disabilities.

Sport has just opened so many doors that I couldn’t have imagined even being possible.

Why is it important to encourage disabled people to take part in sport?

Sport can be an incredibly powerful tool in so many ways, for your social life as well as the obvious physical benefits and for your mental health.

Disabled people are often only told what they’ll never do or be able to do again, but by getting involved in sport and physical activity you can meet so many new people and achieve things you might have thought were possible.

I think sport has had an extremely positive impact on my mental health as well as my physical. Sometimes it’s the only time of the day or week where your head is completely clear or free of daily stresses or anxiety.

Most importantly, though, it’s just fun. Disabled or not, I think everyone should be involved in some sort of sport or physical activity. It doesn’t even have to be competitive.

Have attitudes towards disability improved?

I think they’ve come a long way since London 2012, however there is definitely a long way to go.

There are still huge issues that aren’t being tackled, like access to public transport or even accessible housing.

In 2016, I found myself homeless due to the lack of access to housing and basically knowledge of a disabled person’s needs.

Muscular Dystrophy UK’s Trailblazers are doing an incredible job in raising awareness of these issues and have made massive changes to disabled people’s lives by gaining better access to sports or leisure facilities, cinemas, air travel and Changing Places toilets.

It’s great to be a part of a team that are helping challenge the views of disabled people. I’m a huge believer in the fact that society can disable a person.

Personally, I only feel disabled when I can’t access something an able-bodied person could. It’s just about educating and vocalising the different needs of disabled people because it’s not a one size fits all. Putting in a ramp doesn’t help someone with a hearing impairment, we have to recognise the hidden disabilities.

Making buildings or activities accessible sometimes doesn’t need a huge amount of money invested, just a bit more creativity. Ultimately if everything was accessible, no one would be disabled.

What does the word ‘strong’ mean to you?

Every woman is strong because strength can take so many different forms.

I may not be strong physically at times due to the muscle wastage but, hell yeah I’m strong because I wake up and face it every day and still achieve, regardless of what the future may look like.

I think it’s very important to understand what strength means to you. Some mornings it’s hard to accept that today is the strongest you’ll ever be, because FSHD is a progressive disease and you just do not know what the future holds.

It can be scary at times, but you just have to re-imagine what you see strength as.

I’m very fortunate to have incredibly strong female role models. My Nan and my Mum are my absolute heroes, and the strongest people I know. They give me my strength and have taught me to redefine what strong means to me.

It 100% isn’t about the size of your biceps.

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