All posts by Jennifer Urwin

The best thing about being a disabled dad or dad to a disabled child?

We put a shout out on our online community and social media, to find out what the best things about being a disabled dad or dad to a disabled child are. You didn’t disappoint.

Happy Father’s Day to all you legends! 

Dad sitting ont he soaf with his young son, who has Down's syndrome. They are reading a book together.

Hughie on Facebook: “I have an inspirational 11 year old boy who faces daily challenges but always has a smile on his face. He never lets his disability stop him from having fun and reaching his goals. He’s also supported by his little brother who is just amazing with him. Proud to be their dad. You are both amazing and love you all the world.”

Zec on our community: “My daughters are now 21 and 23 but I’m gramps to Oscar who’s 20 months old. Since he could sit up he’s loved sitting on my lap in the wheelchair. People seem fascinated when we go round the supermarket with him sat on my lap. Now he tries to push me in the wheelchair and he moves it.

The best thing is that he doesn’t bat an eyelid at me in a wheelchair, to him it’s just what gramps does and why wouldn’t he.”

Dad smiling and looking at his daughter who is sitting on his lap, who is making a funny face. She has Down's syndrome.Charlimaisdad on our community: “The best thing about being a dad to Charli-Mai is seeing her achieve milestones, and to see how much she gets out of life.”

FoodFatigue on our community: “For me it’s raising and seeing that my daughter doesn’t bat an eyelid when seeing other people with disabilities. She’s developed a great empathy and it’s great to see.”

Guy on Facebook: “I have had the wonderful privilege of easing and shaping the difficult life of an amazingly inspirational young woman, and it’s such a pleasure to see her flourish now!”

Speedincaesar on our community: “I love being a dad! Watching my daughter grow unfazed by differences. I love the conversations we have. Being a dad in a wheelchair has also given me the opportunity to meet other families with kids that may not have ever met a disabled person before.”

Martin on our community: “Being a dad is the one thing I’m most proud to be in my life.  Having a child with disabilities just amplifies that honour and pride. The two younger children get our eldest involved in everything they do, they see when doors need to be opened and recognise places his wheelchair won’t fit.

Two brother sitting togather at a football match, the youngest sitting on the lap of his older disabled brotherAn amazing moment for me was at a football match recently.  I campaign for better access to stadiums, and one of the things I asked for is accessible family seating so that families can enjoy a game sitting together. In our life it’s often our eldest getting looked after by his younger brothers, but at a football match I took this picture, where clearly big brother, is looking after the youngest.  Had a lump in my throat when taking this, and still do when I see it. It’s pictures like this that make being a dad the best thing in the world. Of course it may be Father’s Day on Sunday,  but I couldn’t be half the dad I am without the support of my wife, and their mum. Like football, being a dad or a mum to me is a team thing.  And when we’re on form, we make one hell of a team.”

We’d love to hear your reasons too. Tell us in the comments below. 

#Attenborough90: Why nature should be accessible for all

Ellie is one of our Scope for Change young campaigners. Here she talks about how David Attenborough inspired her to fall in love with nature, and why she believes everyone should have the opportunity to enjoy it. Ellie standing in a corridor, wearing a blue jumper with a dog on it, and smiling

An inspiration

From a young age, I remember waiting in anticipation on a Sunday evening for the latest wildlife programme, narrated by the voice of the natural world, Sir David Attenborough. He’s ensured the BBC have covered a wide diversity of animals from dung beetles to red kites, to snow leopards over the years. This week he turned 90, and the nation has been celebrating by re-visiting many of his iconic TV highlights, such as when he was preened by mountain gorillas in 1979 for Life on Earth.

David Attenborough has inspired many people in this country and the world to stand up and take notice of the animals and plants we share the earth with. As a result, people are more actively involved with local and national wildlife charities, learning about conservation and many have been inspired to work in the industry.

Everyone has a right to enjoy nature

Only a couple of weeks ago, David Attenborough opened Woodberry Wetlands, a new nature reserve owned by the London Wildlife Trust, which is accessible to all. In an interview with BBC news, he talks about the importance of access reserves:

“We are part of it and if we lose contact with the natural world, you lose contact with a great source of pleasure and delight which is your birth right.”

Disappointing experiences

I regularly walk to my local community garden. It’s brimming with wildlife and it’s where I take many photos of toads, grasshoppers and buzzards. My favourite animals are insects, especially butterflies.

Last year I looked into volunteering with my local butterfly conservation charity, as I wanted to learn how to survey species and the different tools used to conserve them. I don’t drive because my cerebral palsy and learning difficulties effect my hand-eye coordination. So I tried to find alternative public transport to get me to the nature reserve, but because I live in such a large county, a lot of the transport isn’t very regular. You have to really plan in advance to make sure you can get home.

In the end, I decided not pursue the role because of the practicalities in getting there and back. It made me feel down because I knew in my heart it was something I really wanted to do, but due to circumstances it wasn’t realistic. It’s a shame there aren’t organisations working with the major environmental and wildlife charities to support more disabled people to get into conservation. I very much doubt I’m the only person with a disability who’s wanted to be involved in this area and been let down.

Getting my ideas together

Though not all has been lost! I’ve had really positive experiences with my local Wildlife Trust. I’ve been involved in various activities, such as getting teenagers interested in getting outside, and supporting primary school children to build insect hotels. At the beginning of this year I was invited along with four other volunteers to be part of Darwin’s Childhood Garden project. We were all asked to contribute something to the project, and I decided to run a workshop for children with disabilities from a local school. We’re now in the process of waiting for funding for it, but in the meantime, I’m wanting to create greater awareness about why nature should be accessible to all.

My campaign to make nature more accessible

‘All for nature and nature for all’ is the name of my campaign. I want to further educate those working in the conservation sector to make sites of natural interest as accessible as possible: providing ramps up to bird hides, having blue badge parking spaces, braille or audio information boards, allowing assistance dogs, and accessible toilets. I’d also love more exclusive workshops that allow disabled people to participate as much everyone else, and having resources such has easy-read, Makaton and BSL signers and accessible transport when needed. Opening up the senses in particular for those with profound and multiple disabilities is so important – and where better to do that than a national park?

I would like to see that nobody is left behind in my campaign. This week, wildlife presenter Chris Packham opened up about his life with Asperger’s. It really highlighted to me that we need to do more, so that many other disabled people feel they can be involved with the natural world.

Ellie would love to hear from disabled people about their experiences at nature and wildlife reserves – the good and bad! Whether you volunteer yourself at your local wildlife park, or have an experience to share from a trip to your local nature reserve, it will really help Ellie to build her campaign. Please leave a comment below. 

Invictus Games: getting ready for a summer of sport!

The Invictus Games start this Sunday, 8 to 12 May.

Prince Harry decided to create The Invictus Games after a visit to the Warrior Games in the USA in 2013. He saw how sport, competition and teamwork was a key driver in supporting injured service personnel to recover, physically and mentally from injuries. ‘Invictus’ means ‘unconquered’.

Prince Harry hugging an Invictus Games competitor

“These Games have shone a spotlight on the ‘unconquerable’ character of service men and women and their families and their ‘Invictus’ spirit. These Games have been about seeing guys sprinting for the finish line and then turning round to clap the last man in. They have been about teammates choosing to cross the line together, not wanting to come second, but not wanting the other guys to either. These Games have shown the very best of the human spirit.” Prince Harry

The games are being hosted in Orlando, Florida this year, with a whole host of celebs and high profile people getting involved – including President and Michelle Obama.

See how Prince Harry responded to their fighting talk:

We’re really looking forward to seeing how the Invictus Games get the general public excited about disabled people competing at a really high level in sport. We feel like this is the perfect warm up to an exciting summer of sport, culminating in the Paralympics in September. We can’t wait!

Check out the Invictus Games TV schedule on the BBC. We’d love to know what you think.

Inclusive dance at Beaumont College

Sarah has worked at Scope’s Beaumont College since 2007 and was originally employed as Dance Artist in Residence. She was blown away by the students, their ability and potential, so she studied to become a tutor and is now a Pathway Coordinator for Independent Lifestyles and Vocational Skills, with a focus on creative arts.

She teaches and makes sure the students are maximising their opportunity at Beaumont as well as having plans for when they graduate.

Part of my challenge here in Lancaster is to develop more opportunities for young people with learning and physical disabilities within the arts. I do this by developing links with arts organisations, which is how I became involved with The Big Dance.

Here at Beaumont, we’ve taken part in The Big Dance since 2012. A group of students from the college who have since graduated, learnt and then performed The Big Dance choreography. They were invited to perform it in a short film at the Olympic Village in London, and it was played across the world as the dance premiered.

This partnership led to further discussions with Richard Parr, the Producer from People Dancing, to think more about accessibility. These changes could really be seen in 2014’s choreography, where a broader range of people were included in the launch film.

Every year, here at the college we’ve adapted and interpreted this fantastic opportunity to dance and it has brought the community together to enjoy sharing movement. We have worked with local schools, community centres and brought a little bit of sparkle to the everyday grind in corridors at the college too.

This year, I was invited to be a Guest Artist Adviser as part of the creative process, in which they choreograph the Big Dance and the Schools Pledge. You can watch Akram Khan, internationally acclaimed choreographer talk about why he wants everyone to embrace dance. Amran Khan talking about the Big Dance

“I work in an outstanding college”

Fortunately I work in an outstanding college that supports and values innovation. I sit amongst many ‘Change Makers’, so I was supported to be able to impact on this national campaign. I hope also that it will help others who don’t identify with being a ‘dancer’ to get involved and have a go at expressing themselves.

On 6 November, after a 4am start, three trains and a long walk in the rain, I arrived at the dance studio in Roehampton University where I met Akram Khan and 30 dance students. They insisted that I participate in the warm up which was a great way to break the ice and fortunately not any of my muscles! After the warm up, I was able to watch The Big Dance choreography for the first time. It was a very rare treat.

But what could I offer? Well, that’s what I worried about to begin with. I’m a dance tutor at a specialist college in little old Lancaster and I’m not disabled myself. However, I could advocate for all the young people I’ve adapted choreography with and for. Young people who are unable to voice their own passions and needs.

Young people who explore their own physical capabilities, explore techniques and develop their creative and physical voice every day. I’ve learnt so much about dance through working at Beaumont, about the value and power of all movement and the contribution of all bodies as different, but equal.Sarah sitting with other people in a dance studio

I talked to Akram Khan about this and asked about what was important in his choreography.

I saw a change of emphasis from the creative team as they moved from specific movements being of great importance, to them considering and discussing what the significant points of the choreography are. They discussed what was more important: the convention of exactly mirroring the movement by these non-disabled dancers or the intention behind each movement being explored and interpreted.

They acknowledged the value in all responses to the choreography. Thankfully, my presence in the room was a significant development that showed a real shift in approach.

I’m excited to see how they’ve taken our input on board. I’ll continue to drive forward change for the young people I work with, and make sure their voice is heard to create new, exciting opportunities that provide rich and meaningful life experiences.

The Big Dance Pledge is now available,  with a worldwide performance day on 20 May. The Big Dance Week is 2-10 JulyFind out more and sign up!

Interested in Beaumont College courses? Visit their website and find out about inclusive dance

Diary of a job hunter with cerebral palsy: interviews

Self-confessed ‘geek’ Jessica Talbott has three degrees in maths. She’s just finished a short contract for a great company where she could work from home, but now she’s on the hunt for a permanent job again. 

She’s writing a series of blogs for us about her search for work: job applications, interviews, rejections, warts and all. Here she talks about her experience of taking her dad along to interviews as her interpreter. 

Growing up with unclear speech

I used to filter friends according to whether they took the time to listen that bit more carefully to what I wanted to say. Children do everything at 100 miles an hour, so I never blamed the ones who wanted to move on to the next game. Now, my partner understands every word, and I realise that I took people not understanding the odd mutter for granted, because he knows when I’m being rude – it’s very unfair!

Preparing companies ahead of my interview

Jess smiling, and sitting in front of her desktop computerI don’t need an understanding friend when I go for a job interview; I just need a person who sees enthusiasm, intellect and commitment. As I mentioned in my last blog, I’m a bit of a stalker. In my experience, it’s better to email companies directly to offer assistance and to explain about my disability. If they want to meet, I clearly reiterate that my speech is unclear, and that I need an assistant to accompany me in case they struggle to understand at first. It’s important it shows I care about making it easier for them, and not that I’m special and need some kind of entourage. My dad or stepmum help out on these occasions – they are both professionals and are really supportive. I try to keep it from the company they are my mum and dad,  but dad sometimes slips! Besides, the chances of me having a 60-year-old male carer are quite slim, so I’m sure they guess.

Getting ready to impress

My voice is negatively affected by fatigue, anxiety and stress. Interviews clearly stir up the latter two to a great degree if I’m not careful. And if I’m anxious and stressed I don’t get much sleep, so it’s really important I keep calm. The day before the interview is about relaxing; I try to do all preparation before then and get a lot of rest and sleep.

Overcoming obstacles

You learn tricks over the years when you have speaking problems; if people don’t understand something, you re-phrase the statement or use more simple words. In an interview, ideally you don’t want to simplify things, as you want to demonstrate you know the technical language of the business.

I tend to brief my dad on words or concepts that I might want to bring up, but sometimes even he finds it hard if it’s a word unfamiliar to him. One time I was determined to ask an intelligent question using various buzz words, but was forced to simplify due to the interviewers knowing the word, but not understanding my voice, and dad knowing my voice but not the word!

Be flexible and resourceful

Each interview is different. Some ask about the practicalities of you working with them, so it’s important to know what you’ll need and where to get it. Reassure them it’ll all be possible and their company will take on you, not a headache of sorting support out for you.

If luck isn’t on my side and I don’t get the job, I ask for feedback and make it clear I’d still be available for work. This takes a little bit of cheek, but I’m so glad my step-mum encouraged me, as it got me two short-term contracts this year. It’s good to take the feedback and brush up on skills they feel you lack, as it shows you’ve listened.

My four month contract that just ended was great. Lots of people worked from home, so practicalities were never an issue. I could take part in conferences and meetings via phone or messenger. Yes calls were hard but being so junior didn’t really need to speak up at meetings! Over time my colleagues got used to my voice and were good at using email rather than the phone when communicating with me. Once my foot was in the door, my work spoke for me and I was just another colleague. In fact, due to staff leaving, I pretty much had my own project.

Enjoy it!

Above all, enjoy it! I love what I do, so I get in the zone and show them Jess the mathematician, not Jess with cerebral palsy and dad in the corner.

If you would like to chat to Jess, you can join her on our online community. 

And if you’re disabled and looking for work, check out these great employment tips.

Come on supermarkets – please stock nappies for disabled kids

Laura is a mum on a mission. She’s noticed a big gap in the market, and is campaigning for supermarkets to start stocking nappies in larger sizes. Here she tells her story. 

“Nothing worth having comes easy.”

Laura and her son Brody smiling on a rollercoaster rideMy life (well, house) is full of quotes. So much so, my best friend jokes with me about it. Still, on the days I feel like I’m fighting a lost cause, this one drives me.

Around a month ago, I started a change.org petition asking leading UK supermarkets to consider manufacturing or selling larger sized nappies, for incontinent children with additional support needs.

There are thousands of children in the UK, older than “typical” children, who are not potty trained. Naturally, as a result they require bigger nappies. Are they easy to find? Of course not!

My son Brody

A close-up photo of Brody amilingBrody has Global Development Delay, epilepsy, hypotonia and hypermobility. In our special world, he is known to a large community as a SWAN – not yet diagnosed with a syndrome to explain his disabilities. Brody is a tall four-year-old. He wears the largest nappies available in supermarkets (– 6+),  but they are fast becoming too small for him. Frustration with this led to my campaign.

Whenever my campaign is posted somewhere on social media, I get people commenting with recurring suggestions: the continence service, pull ups and cloth nappies. Let me explain why, despite this service and these products, I strongly believe there is a huge gap in the market for bigger nappies in stores.

What’s currently available

Brody has recently been referred to the continence service and hopefully, after a waiting time (my friend has been waiting six months so far) we will receive a set amount of nappies per day. These will arrive in bulk. The continence service is great and very much needed for families like ours. However, the service itself is inconsistent, varying greatly depending on where you live in the UK. This becomes more apparent, the more I speak to others. For example, I’ve heard from families who have children with autism who aren’t entitled, families who are only allowed two nappies a day, and families who aren’t eligible for the service until their children are six to eight years old. One woman told me her child has severe chronic constipation, requiring medication and at least 10 nappies daily. But she’s not yet entitled to any help from the NHS.

Pull Ups, which come in slightly larger sizes, are designed for children in the process of potty training. Hence there are fewer nappies in a pack and the absorbency isn’t as good. They’re not adequate for a child who is doubly incontinent. Not only this, it would cost a small fortune for parents to buy Pull Ups, as one pack may last only a day or two.

Cloth nappies may suit some children with additional support needs, and there are some fantastic companies where parents can buy these online. However, this isn’t a best fit solution for every parent and child for many reasons (although, I’ve found a lot of cloth nappy fans will argue this point).

Life costs more when you’re disabled

The simple truth is thousands of parents require larger nappies because their children are either ineligible for the continence service, or require more nappies than they receive. As such, they are forced to buy online because they have no other choice. These nappies come with the classic ‘special needs’ price tag – overpriced! The sad reality is – life costs more when you’re disabled.

Online shopping can also be inconvenient because you have to wait for an order to be delivered. Not as simple as popping to your local supermarket when you’ve run out of a product.

Disabled consumers are a big market

Brody on a red plastic rockerIf you are in my shoes, you’ll be all too aware that people don’t think about these things unless it affects them. However, it really shouldn’t be this hard. The Extra Costs Commission report noted that there are over 12 million disabled people in the UK – that is almost 1 in 5 of the population – and our households’ expenditure, the so-called ‘purple pound’, totals £212 billion a year. That’s a lot of money. And high street businesses could take advantage of it.

I strongly agree with Scope that by sharing information about our needs and expectations as shoppers, and by being more demanding as consumers, companies will have the market data to serve us better. We need to shout loud and let our voices be heard!

We are a community, used to fighting battles. Please fight this one with me. Sign the petition and share it with your friends. Maybe together we can make a difference – one that would benefit many families.

My message to the supermarkets?

You have the opportunity to take the lead and cater to a huge consumer group – one that is often disregarded. Please listen. This is about supply, demand and inclusion. It’s simple – there is a demand for this product and you can provide it. Just take M&S as a wonderful example. Grandmother, Rita Kutt wrote to them and explained the need for larger sized clothes with popper buttons for disabled children. They listened! We are consumers – like everyone else – that should be heard.

What do you think? Could you benefit from being able to buy this product in a supermarket near you?

The Extra Costs Commission has called for disabled consumers to be ‘bold and loud’ just like Laura.

Consumer power! M&S release new clothes range for disabled kids

Rita’s adorable young grandson Caleb has cerebral palsy. He needs nappies, and he’s also peg fed through his stomach, so accessible clothing with poppers is pretty essential. Rita noticed a huge gap in the market for affordable clothing for older children, and contacted Marks and Spencer to see if they could help. 

This blog has now moved to our online community.

Join Rita on our online community where she tells her story. 

20 poems for 20 years: my experience as a wheelchair user

When Stephen was 16, he had a sledging accident that left him paralysed from the waist down. That was 20 years ago, so to mark the anniversary, he’s written 20 poems telling his story. They reflect on his experience as a wheelchair user, and how he finds society’s attitudes towards disabled people. 

Having worked on this project for the past couple of years I hadn’t really appreciated how intensely personal the subject matter was. For some people, colleagues, friends and even family, this was the first time I had really outwardly articulated what was in my head.

Being viewed differently by society

The poems covered everything from my accident, to recovering in hospital, getting to know my wheelchair and how I now feel 20 years on. As I started to write and the poems began to come together, I realised I was also writing about how it feels to have a disability and how that changes the way you are viewed by society.Stephen smiling wearing sunglasses as the sun sets

So I was pretty nervous when I came to post my first poem via social media. I used Lego figures to visually represent what I penned in poem form, because let’s be honest you are never too old for Lego!

My reasons for doing this were not so much about the anniversary itself but more about my reflections on spending my adult life as a wheelchair user. Not for a moment do I regret my accident. Life is simply too short. I’m very proud of who I am and what I’ve achieved but life isn’t and hasn’t been without its challenges. Naturally some of these challenges have been down to adapting to a new life with a physical disability but some have also been about my frustrations at being given a label and having to deal with the way disability is viewed in today’s society.

An emotional journey

Whilst all of my poems provoked some sort of emotion internally when I wrote them, it was the ones about discrimination that caused the strongest reaction. One of my poems is called The Acceptable Discrimination, and this is about the fact that in many situations it seems okay that there are barriers that stop disabled people from just being able to lead a normal life.

I live in London and whilst it’s a wonderful, thriving and vibrant city, it can also be incredibly frustrating. Every day things are made difficult or impossible just because it’s not set up to cope with disabled people. The easiest example of this is the sheer number of public buildings, shops and amenities that are no go areas due to steps.

Public transport is also nothing short of a national disgrace. The fact that large parts of the London underground are without lifts and level Stephen, in his wheelchair at the top of a skateboard ramp, with graffiti in the backgroundaccess to the trains is staggering to me. It’s also virtually impossible to travel on any overground train without assistance. We’re told this is because some stations are old or that trains are too high, yet in Scandinavia I’ve travelled on trains independently where every fourth carriage is lowered to the level of the platform. It really isn’t that hard.

Attitudes towards disabled people

I honestly believe that most of this is down to attitudes. We still live in a society where many people don’t think twice about using a disabled toilet, parking in a disabled parking bay or in front of a drop-down curb. Nobody would entertain using a loo for a different gender so why should a disabled toilet be any different? Just as frustratingly there isn’t a day goes by where I’m not asked if I need help, or being randomly congratulated for doing simple things such as living on my own, having a job or going on holiday.

Changing the way people see disability

The reaction to the poems has been brilliant and I’ve been overwhelmed by the comments I’ve had. What has struck me the most has been that some people have said they have challenged the way they think about disability. For me this is the biggest compliment I could receive.

I’d love nothing more than if we just looked at the person rather than seeing their physical appearance, race, age and gender first. We’re all the same really and we all have the potential to be brilliant. 

Here are two of my poems that I hope you will enjoy:

The arranged marriage

The first time we met I didn’t want you.

A lego man lying in a bed, with a wheelchair and a set of drawers next to himI didn’t want to even acknowledge your existence.

I had no choice but to take you and I resented you for that.

You were confident, brash, everything I wasn’t.

But in your own way you needed me.

There were others waiting to take you.

But you and I were brought together.

We had to make it work.

The first time was awkward,

I didn’t know where to put my hands.

Fumbled across the room.

You were patient, you made me take it gently.

And the first time we went out,

It was awful.

I cried hot, childlike tears.

I felt everyone was staring, judging us.

But you didn’t care.

You waited, patiently till I was ready.

And we haven’t looked back.

20 years

Man and chair.

The acceptable discrimination

I am denied entry because of who I am.

Hairdressers, restaurants, theatres and gyms.

A lego figure in a wheelchair, at the bottom of some stairs. At the top of the stairs is a lego waiter offering a glass of wineMany seemingly a step too far.

Unable to travel where I want on public transport.

Those special parts of the city forever out of reach.

That is until someone decides to give me a lift.

Not able to live or work where I choose.

Having to ask for help when all I want is just to blend in.

Made to feel like a second class citizen in a first class world.

This is the discrimination I face every day,

for physically being different.

But I am the same.

I commute, I work, I pay my dues.

I’m tired from the effort, this city, of it just being ok.

Tired of the fact it happens and is somehow tolerated.

Tolerated and ignored by those with the power to make a difference.

But it’s actually their indifference,

that makes it acceptable to turn the other way.

Have you got a similar experience of becoming disabled later in life? Have you found that attitudes towards you have changed?

You can read the rest of Stephen’s poems on Storify or his website, and follow him on Instagram and Twitter. 

I published a book so others can walk this road with me

Rachel is mum to Sam, who has severe cerebral palsy. She writes a blog, and she’s just published a book called The Skies I’m Under.

She’s doing a Q&A on our community this week – feel free to come and say hello! Here Rachel talks about her experience at the time of diagnosis. 

Memory is a funny thing. I can tell you the name of the boy I fancied aged nine (Andrew Jafferies) and sing you the ‘Milkyway’ advert from start to finish, but I can’t tell you why I just walked into the living room. It seems my brain is very good at identifying important information and promptly forgetting it.

A day I’ll never forget

There are some things though I will never forget. Like the day I was told my son, Sam, had been born with severe brain damage. Three years ago, I set off on a journey of remembering. I sat in the summerhouse in my garden and started writing about my early days of motherhood. I wasn’t just sketching out what had happened but I settled there, and filled in the hues and shades of a time when my life was turned upside down.

Last month, I published my memoir about becoming the mum of a severely disabled son, so now others can walk this road with me. Here’s an extract from The Skies I’m Under. It tells of how my husband, Tim, and I were told the results of an MRI scan that confirmed Sam’s brain damage.

“I’m afraid it isn’t good news.”

‘The doctor in front of us finally stopped, swung open a door, and showed us into a small office. We entered clinging onto our hopes of a miracle, with our dreams intact. The room resembled a large cupboard, absent of a two-seater sofa or box of tissues. With the small room void of natural light, limited space and haphazard layout, the doctor was required to perch on the edge of a desk as she began to talk.

“I’m Doctor Rutherford,” the slight woman explained. She introduced her colleague, whom we had seen earlier that day.

“I’m afraid it isn’t good news. The scan shows severe brain damage.” Her words were spoken lightly, yet the room began to close in. She gently and calmly explained in detail how the scan showed Sam had been very unlucky.

I sat rigidly and gazed across at the scan. I began to see a withered, shrunken brain, with deep darkened rims of space where healthy tissue should have been. She explained Sam’s brain damage was both unusual and extensive. Not only had he suffered damage to the white matter but also the grey matter.

“From the scan we can only assume that numerous insults occurred in the time leading up to Sam’s birth and then again at delivery,” she informed us. Her words became a blur of white noise as my mind drowned out the truth; replaying all the times I may have allowed this catastrophic event to occur.

How had I missed my baby struggling inside me?

How had I carried on singing, stripping wallpaper and going about my daily life, when the fragile being inside me was suffering repeated insults?

What kind of mother was I?

Refocusing on the words being thrown around the room, I brought my mind back to the small office and information I wanted to ignore.

“All parts of his brain are affected. He will live with cerebral palsy… resulting in learning difficulties… as well as physical limitations.” There was nothing to say, so we simply nodded, indicating our readiness to hear more.

“He will have complex needs and it seems the areas affecting temperature regulation and vision are particularly damaged.”

Tim bravely asked questions and I was surprised at his ability to talk with a steady voice. The doctor remained vague. We weren’t told he would never walk, talk or eat, but it was indicated that each of these things was in jeopardy.

Our future plans were erased

It was as though the doctor conjured up a paintbrush dripping with brilliant white emulsion and began covering the wall of our future. What had once displayed vivid colourful strokes of our hopes, dreams and future plans, was being abruptly erased. The blank canvas that remained felt daunting rather than full of potential. Nothing could be assumed, and nothing could be expected.

A bomb had exploded in the middle of our lives splintering our world into thousands of tiny pieces. Like walking wounded, we staggered out of the hospital holding onto each other, dazed and bewildered. The words spoken over us rang in our ears. As reality began to sink in, I was surprised at the magnitude of my shock. I simply hadn’t prepared myself for hearing my little boy had profound brain damage.’

A different outlook

I couldn’t imagine what my life would become and how hard it would be. I struggled picturing a world where my son was disabled and my home full of disability equipment. Today, I appreciate that the most picturesque views are often found down a bumpy road. I couldn’t foresee neither the heartache, the love, nor the smiles.

Win a signed copy! Ts&Cs

Want to win a signed copy of Rachel’s book? To enter, sign up to the community and comment on Rachel’s discussion. Only one entry per person. The prize draw closes on 1 February at 10am. The winner will be chosen at random after this date and notified via email. The book can only be posted to addresses in the UK and no cash equivalent or alternative prize will be offered.

Rachel is doing a Q&A on our online community from 25 to 31 January. You can ask her about her experiences and find out more about her book. 

My experience on People’s Strictly, as a dancer with MS

Trishna Bharadia was a contestant on the People’s Strictly for Comic Relief.

Trishna was diagnosed with Multiple Sclerosis at age 28 in 2008. She works full-time as a translator for an information services company but in her spare time has collaborated with various MS and disability organisations, to ensure that people with MS are supported and their needs are understood within the wider community and by the general public. Here she talks about her experience on the show. 

Dancing out of my comfort zone

I’m someone who has always loved the idea of dancing but never had the confidence to do it. Being diagnosed with MS brought a huge amount of unBlack and white photo of Trishna in rehearsal with her dance partnercertainty into my life and changed the way that I viewed things. The nature of the condition means that I could quite literally wake up tomorrow and not be able to move my arms or legs. No warning. It can just happen.

This led me to taking the bull by its horns and I started to do all the things that I’d always wanted. Dancing was one of them. I took up Zumba classes, where I really fell in love with dancing. It taught me that actually you don’t need confidence or even a certain level of physical ability to dance, you just need a passion for it and to be able to think outside the box.

Trishna wearing all yellow, posing with her dance partnerI’m a big fan of Strictly Come Dancing and when my sister heard that they were looking for people to participate in the first ever People’s Strictly for Comic Relief, she knew she had to enter me.

There were over 11,000 nominations and just six of us were chosen. It was an honour that the producers believed my story was worth telling and that the work that I’d done with various MS charities since being diagnosed warranted me making one of my dreams come true!

Facing Challenges

Dancing with MS or other chronic conditions or impairments isn’t easy. While I was having the time of my life on the show, dancing with the wonderful Aljaz Skornajec, behind the scenes I was also struggling with fatigue and the uncertainty of my condition. The four months were physically, emotionally and mentally tough, Trishna wearing a white sparkly dress, posing in a dance move with her partnerparticularly as I was still working full-time, as well as filming and dance training.  Training was anywhere between 10 to 25 hours per week for six weeks.

Just a few weeks before we were going to do our final dance, my foot went numb and I was terrified I was having an MS relapse; one of my relapses had previously involved me losing the feeling down one side of my body. Turns out afterwards that I actually had localised nerve damage from poorly fitting dance shoes, but it served to remind me just how uncertain my condition can be.

The production crew, other contestants and professional dancers became like a family to me. I’m used to having a strong support network around me, which enables me to do all the things that I want to do. On filming days it was my new Strictly family that ensured I was able to get enough rest and that adjustments were made to ensure I was being shown at my best.

Aljaz was fabulous and there were parts of our jive routine that we adapted and adjusted to take into account my fatigue and wobbliness when my muscles started tiring!

Doing Strictly has helped me to appreciate further what I’m capable of physically and also allowed me to push myself and find Trishna and her dance partner giving each other a high fivenew limits. I would do it all over again given half a chance! I was supremely aware, however, that not everyone with MS would be able to do what I did. I was contacted by the Wheelchair Dance Sport Association (WDSA) and have since helped them to promote wheelchair dancing. I mean, who says that dancing has to be standing on two legs? Dance is a beautiful and challenging art form and disability definitely doesn’t have to be a barrier to people who want to give it a go!

Want to know more? You can connect with Trishna on Facebook or Twitter

Have you got a dancing story you’d like to tell us? We’d love to hear about it – just comment below.