Our Stories

As disabled people, we know that the many conditions which fall on the spectrum continually shape our lives in myriad, subtle ways. The effects of disability on everyday life experiences are too numerious to count, and this is why the bits that people choose to share to others is really just the tip of the iceberg. 

Below are real life stories of people's experiences with disability at NEXT, or why they wanted to be involved in the network. Disability does not discriminate, and as latest statistics show that 8 out of 10 people are not born disabled but acquire their disability through illness or accident, the likelihood of coming into contact with disability is quite high. Click at the side of the name to learn about their stories. 

Share your own experiences with us able2@next.co.uk

Jayne Ogley - Team Manager

My name is Jayne Ogely, and I have been with NEXT for over 18 years working within Distribution, it's amazing how time flies.

 

Back in 2003 I had my first child, a boy and I named him Andrew. Everything was perfect and when Andrew was 1 I joined NEXT, a new baby and a new job, everything was looking perfect.  Then in 2007 I had 2 major turning points in my young life. I moved with the business to the newly built Dearne Valley Box in Yorkshire and I noticed something just wasn’t quite right with Andrew. Following a lengthy process Andrew was diagnosed as neurodivergent. 

 

The next few years for me were tough, fighting for support, fighting for him an education and fighting for us both to be heard but most importantly understood. The one place I never had that fight was at NEXT and more importantly with the fantastic line managers and colleagues who supported me. When you spend most of your adult life at work, don’t underestimate the power of a fantastic line manager and the impact that they have on you and your overall worth and wellbeing. 

 

Having a line manager who has an open door policy and encouraging people to use it was vital for me. Having the ability to just listen to understand, rather than listen to reply is vital when it comes to disability and caring for someone with a disability. He was a senior manager and he was prepared to pull up a chair and chat, working to achieve solutions rather than criticising when issues arose. As a result of being a carer for a disabled child this same line manager asked me to be part of the NEXT’s supported internship programme Project Search which supports young neurodivergent people into work from education. Being involved with Project Search and NEXT supporting me with this has taught me so much about my son, but also how diverse and wide disability is, because up until that time I was wrapped up in my own world. NEXT afforded me the flexibility to arrange childcare for my son when things didn’t go to plan, but the most important thing is that NEXT felt that despite me being a carer I mattered. 

Where am I now you may ask? I am a Team Manager within our Elmsall complex and thriving on the challenges a growing business brings. Andrew, well whereas at one point I was fighting for everything he should have been entitled to anyway. He now works here, at NEXT and he loves it. He works in Loss Prevention, and his disability has opened others eyes to the world of disability in a positive way. They love his little quirks and with the confidence that comes with independence will come the confidence to seek support and help when he needs it. Being a parent can be the most challenging but enjoyable experience ever, when your child has a disability, asking for additional support can be hard, but at NEXT they got it and did it.


I am proud to be part of the Able Committee - disabled voices and our stories can now be heard!

Anna Button - DEI Specialist

Did you know that 8 out of 10 people who currently have a disability are not actually born with it. I am one of the 8. It's not something I asked for, or if I am honest initially wanted, however now it's such an integral part of my identity that I probably wouldn't change it - apart from the pain,I would change that. However I wouldn't be the person I am now if it wasn't for my experiences. 

I come from a working class background and an area in Barnsley where difference isn't always viewed as a good thing. It didn't help that I was from an ethnic minority background, which led to some significant bullying in my youth, however as I have grown up, it has been my disability which has been my arch nemesis. 

I got my first disability when I was 12. I was diagnosed as being d/Deaf and for some time wore hearing aids to help me particularly in school. School was to some extent my prison and my escape as I love learning, but in the 80's understanding difference or at that time what was seen as a defect resulted in the bullying moving from my skin colour to my disability. It's probably the reason I adapted and now have made the choice to not wear hearing aids and use lip reading instead.

I have always been ambitious, and I have always been a fighter which is a common theme that all disabled people will talk about. When I was told that I couldn't do my career of choice because of my disability, what that started was a journey of changing the narrative and expected norms that pretty much starts from childhood and is faced in all aspects of life. 

Fast forward to when I was a teenager, I became very ill with an eating disorder which on investigation was discovered to be a result of a chemical imbalance in my brain which affected my view of self. As a result of that I will be on medication for pretty much the rest of my life. What they don't tell you is that the brain is the 'mother ship' to most other conditions and when I was 38 as a result of not looking after myself as well as I should, I was diagnosed with a condition which I haven't yet conquered - fibromyalgia. 

Fibromyalgia is to some extent classed as a hidden disability, however to look at me most days I walk with a walking stick, am constantly cold so hiding that can be difficult. I am in pain all the time but that level of pain can vary depending on several factors, one of them being the weather. Despite this I have always wanted to keep working and in particular raising awareness around the impact of disability and the experiences of disabled people. 

Disability for many is something that is hard to come to terms with - it was for me. I was the person who wouldn't share that information with organisations initially, I wanted to be recruited based on talent, not because I was disabled. It takes time to become comfortable with who you are. It might even involve some grieving about the person you used to be, but what I learnt is that sharing your difference is not about a quota, it's about recognising the multitudes of talents that disabled people have and being comfortable to ask for reasonable adjustments if you need them. Disability does not mean inability, it's also not a dirty word. It's about a community of people who want to thrive in society and have purpose. 

I have been with NEXT now 18 months and I think I have gone some way in educating people about what disability really means. Being able to ask the questions in a safe way is vital to get a better understanding about what disabled people need, especially in the workplace. For a long time I saw disability as the door that closed me off to opportunities I wanted to take, but actually it's allowed me to go through some doors where I have had some amazing experiences. Acceptance internally of myself was key, and then finding the voice to be open and honest with people slowly followed. That person who was told she would amount to nothing because of her disability when she was 12, has won awards for her work in diversity and inclusion, and in disability in UK and Europe as well as supporting many disabled people see that with a bit of extra support they can...rather than they can't. Also having a boss who is not scared to ask the questions rather than make assumptions helps (thanks Dawn!). If you hear a little buzzing as I walk past, you are not hearing things it just me with my little tens machine watch which helps takes the edge of the pain...but I have great fun saying its a computer or mobile phone!

Craig Parker - Technical Support Analyst

I always considered myself (when I came to adulthood) in good health. After shifting loads of weight, running multiple times a week and notching up a number of half marathons and the 3 peaks challenge and all this despite asthma (I’ve frequently been told I peak flow better than people without) I was riding high! In the September of 2010 (a matter of months after doing 3 peaks), I suddenly lost the ability to talk which was a problem being in the middle of conversation. Coming out of an epileptic seizure is especially unusual when you’re in the middle of the front room with everyone looking at you (and you’ve got no idea why at that point!). Another seizure and a number of tests/scans I was diagnosed with multiple sclerosis (MS) in December. 


The loss of driving licence for 12 months was the worst part of it (at that point) as I had no other symptoms or issues. 


Multiple sclerosis can have symptoms ranging from absolutely nothing to severe mobility issues, hard spasms, seizures, extreme fatigue, incontinence, brain fog (inability to concentrate/focus) loss of vision or hearing the list goes on. Some of these may be temporary or permanent, but even if they go they leave a little something behind as a reminder. To complicate things there are 4 types of multiple sclerosis of which I fortunately have relapsing remitting (or RRMS). It affects mullions in the UK and across the globe and affects all gender, age, relgion, ethniticity and race.


My own current list of symptoms: 

Poor balance (permanent)

Spasms at night in limbs (and cannot stop them or sleep until they stop) (permanent)

Loss of vision in one eye (temporary)

Loss of sensation in one arm (temporary)


Having support in those times makes all the difference and very fortunately I have had support from family (the fiancé became my wife in April 2011), friends and work colleagues.There are lots who don’t get that and I’d like to be a part of something that helps give support to those who need it. When I was contacted regarding a support network for people with disabilities (visible or invisible) there was no question of whether I wanted to be a part or not. 


Having worked at Next for 5 years now I’ve fortunately been supported whenever I’ve needed it, including appointments and making sure that adjustments can be made if required/requested. There are many people who don’t ask (because they’re afraid to or they don’t know who to), if we can be the place and people to welcome others and guide them in the right direction why shouldn’t we?

Andrew Lee- Senior Developer

I work as a software developer in Warehouse Systems and I’ve been at Next for about 6 years now with a year out elsewhere. I was diagnosed with Arthritis in my fingers back in the 90s, a genetic form of the disease that mainly passes down from mother to child, which makes sense as my mum had it too. Obviously, being a developer means I’m using a keyboard pretty much all day and this can be very painful at times. I can go months with no problems at all but then I can have months where it is so painful. 


Over the years I have used ‘Dragon Naturally Speaking’ software at places I have worked, which lets you control the computer by voice rather than having to use a keyboard. It is such a relief and amazingly accurate once it has been trained to recognise your voice. 


Unfortunately the experience of getting this installed at Next as a reasonable adjustment was not a good one. It took around a year from requesting it to getting it working properly. At every stage there were problems; knowledge around requesting the reasonable adjustment, installing the software, moving to a new laptop, dealing with changes to admin settings on the computer. It was a real battle to get it installed and working, I had to push all the time for people’s help in sorting out issues, most of the time the problems I was having were not regarded as priority because only I was having the issue. This made me feel disrespected, like I wasn’t important because of my health condition. 


So I started campaigning for change, to try and improve the situation. Here are a few of the improvements I would like to see



I’m hoping that with Able we can address some of this, helping raise the profile of disability and health conditions here at Next for the benefit of everyone, individuals and the business.

Sophie Greenhood - Team Member Retail

My name is Sophie, I’m 26 years old and I work at the Bedford store as a sales team member on Menswear. For the last 3 years I have been in and out of hospital a lot, with complex gastrointestinal issues, which have resulted in me being fully dependent on an NJ feeding tube for all my nutrition, for the last 10 months. Previous to getting my feeding tube, I was on a high calorie diet as well as medical shakes, vitamins and supplements but I was losing a dangerous amount of weight. In addition my bloods always showed a lot of deficiencies, as I had diarrhoea immediately as soon as I started to consume anything orally, as well as being in a lot of pain. A feeding tube is always a last resort, as no one wants to be fed that way, so I had one placed as an emergency when I started to deteriorate suddenly. Things got that bad I would end up spending all day sitting on the toilet as nothing I ate would stay inside me, this took my life away from me as I couldn’t leave the house!


For anyone who doesn’t know what a Nasojejunal tube is, it’s a tube that goes down your nose, bypasses your stomach and goes into the jejunum (small bowel).  This ultimately gives your stomach a rest. This type of tube has to be placed via endoscope, which is always a very long & traumatic experience for me. I am fed continuously and connected to feed all day long, so I wear a backpack that contains my feed & pump all day. When my feed comes to an end and I have to set up the next bottle in the staff room everyone is always intrigued by the process of it and comes over to have a look, which I have absolutely no problem with at all or people asking questions. 


Working for Next has been incredible, my store managers and everyone I work with have been absolutely amazing and I cannot thank them enough! When I woke up in endoscopy after my tube was placed, all I could think of was work and that I was going to lose my job, because of now having a tube! I was very quickly reassured by my managers that this was definitely not going to be the case and when I was told by doctors I could return to work, I absolutely did! This wasn’t until a couple of months after, but it felt amazing when I could finally go back. Everyone has been so willing to learn with me what tasks I can carry out safely and what adaptations we could make so I could still be involved in a lot of things. There are SO many tasks I can still get involved with and carry out, which is thanks to everyone I work with. I always say this, but we do work as a team in my store and I am so grateful that everyone has been careful when working around me so as not to get my tube caught on anything, as this can rip it out. 


Even before getting my NJ tube, everyone I worked with provided amazing support, as I would constantly have to leave the floor to take medication and even more in urgency to go to the toilet all the time. I remember one day, just before being signed off by the doctors, I was helping a customer with a suit fitting and I had to run off urgently to the toilet. As I ran I was shouting back to the customer an apology, but I have diarrhoea. At the time I found it hilarious and still do find it hilarious, as there is no point in being embarrassed about it. Quite a lot of people got to know about my toilet urgencies and one of the reasons why I work on menswear is the fact it’s closest to the toilets. Even more hilarious than that though was when I turned up at the hospital for a colonoscopy one day and it was a customer who likes to shop in our store quite a lot, performing it. Personally, even if things are really bad I like to find the funny side of the situation, because the majority of the time someone, somewhere is having a far worse day than you are! I’ve never had a problem with my tube and customers, most of the time don’t even say anything and the ones that do are just curious, wanting to learn and are always polite.


Life with a feeding tube is very unpredictable, as there are a lot of problems that come with an NJ tube, due to it being a much longer tube, than a gastric tube (NG), so I am only able to work as & when I can and sometimes I have to call in very last minute to say I’m not able to come in, which I absolutely hate doing and feel so bad! I also still experience severe nausea and pain in my stomach that is so bad that I can’t even stand up on a daily basis, which I’ve learnt to live with over the years, but it can mean I’m off for a few weeks at a time. I’ve never had any pressure from any managers though and always told to return to work again when I am ready to. My feeding tube nurses have always said that I am extremely lucky to work for a company who have been so amazing, supportive and accepting as they do not hear of it very much! They are absolutely right, I am extremely lucky to be working for Next!


I love to raise awareness of tube feeding and my illness via my Instagram account, in hope that it might help people overcome the embarrassment of conditions that involve the bowel, as many people will suffer in silence due to being too embarrassed to go to a doctor.  On June 26th this year, I joined the charity GUTs UK in a campaign to break the taboo around poo and to get people talking. At the end of the day we all do it, but it’s about knowing what’s normal for you, what’s not and what potentially could be something more serious! I would never give out medical advice, but I’m always happy to talk if someone is worried and wants to discuss anything!

Genna Douglas - Charities Creative Co-ordinator

Genna was diagnosed with Parkinson’s in 2016 at the age of 34 whilst on maternity leave. Here she shares her experience of young onset Parkinson’s, and the challenges of balancing family life with work commitments.


I’d noticed symptoms for a while before I was officially diagnosed with Parkinson’s. I was on maternity leave with my youngest daughter at the time, and I hadn’t had a good pregnancy at all. 

Simple things like doing the washing up, or trying to get a flip flop onto my foot, had become strangely difficult. My doctor thought I’d suffered nerve damage during labour with my daughter and put me on tablets. But I wasn’t convinced.

After going backwards and forwards for a while, they referred me to a neurologist where I had a DAT scan, which was when I was told I had Parkinson’s. 

You just don’t expect that you’d have to tell your husband or family that you have something like Parkinson’s. Obviously it was a shock for everyone involved. Everyone is supportive but sometimes I think they find it difficult to know what to do or how to help. Even I can’t explain how Parkinson’s makes me feel - all the symptoms are so different. 

My children are too young to understand completely. I don’t hide it from them but I haven’t sat with them to talk about it at length either. I’m wary of taking them to groups where people are more advanced that I am. I don’t want them to worry about the future.

My main symptoms are muscle stiffness in my right arm and right leg, and I get a tremor which varies day to day. I take slow release tablets, and at night time I can be quite unsteady on my feet and lose my balance. I get very tired and don’t sleep well either as I have Parkinson’s-related insomnia. I can’t switch off. 

I prevoiusly worked as a childrenswear design and had a great team. NEXT has been really good and supportive. But there are times I find things difficult. 

On a bad day I’m very tired in the morning and it takes me a while to get going. I really struggle with getting the girls ready, getting to work on time and taking my medicine, which takes a while to kick in. So I can be stumbling around the kitchen trying to sort everything out. 

At work we stand for a lot of our meetings, which I find really hard. I will often sit down or lean on the chair. It probably looks like I’m not interested, but I’m trying to keep my balance!

It’s hard because people see me and I seem well so they expect me to carry on and keep going. 

I’ve spoken to a few people who haven’t told their employers and don’t feel ready to, but I suppose it depends on your job. NEXT are very inclusive and I have a good relationship with my boss. I’ve reduced my hours, but having Parkinson’s has made me realise that I have to think of work as just work. Parkinson’s makes you put things into perspective. 

One thing that stays with me is how, when I was diagnosed, most of the information available was aimed at older people. Even a leaflet about talking to your employer had an older person on it. That’s one thing that really stuck out. 

I think there needs to be more awareness that you can get Parkinson’s at a young age. I always tell people that I have it because I want people to understand what’s wrong if I’m not well. I think people probably don’t say that they’ve got Parkinson’s because they’re worried about the stigma attached to it, and what people are going to think.