Category Archives: Real life stories

Everyone focused on the negatives, the things that were ‘wrong’

Sam is mother of nine-year Lucy who has a complex genetic condition. 

In this blog Sam talks about her journey in pregnancy to the birth of Lucy, highlighting the gap in parental support.

Sam during pregnancy
Sam during her pregnancy

I’m married to Craig and we have our daughter, Lucy.  Lucy’s our only child.  She’s now nine years old.  Lucy was born with a very rare, almost unique condition called an unbalanced translocation. One of her chromosomes is missing a little bit off the end and in its place is an extra bit of another chromosome.

Clearly somebody thought there was a problem

I had been trying to conceive after getting married for about three years with no success and went through all of the different tests that you do.

The first round of IVF was unsuccessful.  Then we paid for our second round of IVF. We succeeded. We thought, ‘Great.  That’s fantastic’.  Then at the twenty weeks scan, everything changed.  She was too small, there was not enough fluid in the womb.  I had the scans twice a week for the remainder of my pregnancy.  I also had something called Dopplers every fortnight. Basically, measuring the levels of oxygen and other things, going in to make sure that there’s no placenta lymph insufficiency. We also saw an obstetrician every week, from about 22 weeks. Clearly somebody thought there was a problem.

I had a high-risk pregnancy. When I got to 37 weeks they pushed us into having a C-Section a bit earlier than, perhaps, we should’ve done.  She was born at 5 pounds 1 ounce. I bled a lot. I was quite poorly.

I hadn’t held my baby much or seen her enough

When she came out her left leg was above her head. It was a right odd shape because of her hip dysplasia, which they still didn’t know about because they just said she was breech.  I wanted, skin-to-skin contact but I only spent about five minutes with her. They took her off to a whole different department in the hospital.  She wasn’t even, in the room next door.

A paediatrician stuck her head through the ward curtain and said, ‘I think your baby has got a genetic problem,’ and tried to go away again.  I said, ‘What do you mean, like Down’s?’ that was the only genetic condition I knew.  She said, ‘Yes, I think your baby has got Down’s Syndrome,’ and then left me.  I was on my own for about two hours after that.

In high dependency unity
Lucy in the high dependency unit.

I hadn’t held my baby much or seen her enough.  I couldn’t feel my legs because of the spinal block, but I persuaded the nurses to let me go with my mum and my husband to see my baby.  They had to wheel me to the other bit of the department.  I was so physically poorly I was sick when I got back but I was determined to see her, she was tiny but perfect.  She was in the high dependency unit (HDU).

I would’ve broken sooner had I not been able to see her

I was in hospital for five days.  To be honest I think I would’ve gone stir crazy if I’d stayed any longer in that room.  For my own sanity I came home, but having to leave her, I howled like an animal.  Coming back without your baby having gone in to have one, it’s absolutely horrendous. The worst experience of my life.  My heart and soul were 25 miles away in this hospital where Lucy was in her little cot.  Every day we’d go in to see and cuddle her.

You’re not supposed to travel, really, having had a C-Section, you’re not supposed to be in a car travelling, so I got this special scar cover for protection.  All the things I did physically were wrong in terms of healing after major surgery, but emotionally I would’ve broken sooner had I not been able to go and see her.

I just lost it

The initial diagnosis side of things came on day two.  There was a whole load of stuff going on and it wasn’t handled very well. There was no counsellor there at all. I do think that was a bit odd.

When she was born there was a paediatrician there.  He said she had ‘Dysmorphic features’ which I took to mean he thought she was funny looking.  To be told that when you’re literally high on drugs because you’ve just got the morphine flowing through you, I just lost it.  He should’ve known better, than to say that.

Sam holding baby
Sam holding Lucy

You can’t even see your child. They’re in a completely different room in a different ward.  Somebody you haven’t even met has said these things about your kid and you think maybe they’ve got it wrong. I went into, sort of, pretty much denial.

The system seems to write off your child

I know she understands what we’re saying and we understand what she wants.  I can’t describe it, really, apart from that.  Everybody who knows her loves her.  She’s a very warm personality and funny, a wicked sense of humour.  These are qualities I don’t think I saw at first because everyone focused on the negatives. Certainly nobody told me about these and we had to just find out ourselves.

That’s the point.  The real shame that at the beginning, the system seems to write off your child, particularly with learning disabilities. It’s all focused on what they’re going to be able to achieve. You know, job, marriage, that we have put categories on those as valuing, as important. It’s society that makes it difficult.

Lucy and her mum and dad on a day out
Lucy and her mum and dad on a day out

She’s just won a Triumph Over Adversity award. She got picked out of thirty in her age group in the category.  She’s just incredible.  She has this depth of soul, just having suffered so much. She has a bravery that is truly empowering to be around and a forgiveness, as well.

I really wish somebody had told me that beforehand.  ‘You are going to enjoy this kid.  Yes, it’s going to be hard work, physical hard work,’. I wish there’d been more out there saying, ‘This is an opportunity.  You, your husband, your family, your friends and everybody that comes in to contact with her will grow into better human beings because of this experience.’  I know that sounds really rather profound, but it’s genuinely true.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Become a #DisabilityGamechanger and  donate today and help us provide services for families and provide the vital support they need.

 

I did a head and beard shave to help other families like us

Peter’s daughter, Elara, has cerebral palsy and has used Scope’s Sleep Service.  Peter wanted to help raise awareness and money for Scope so organised a fundraising event.

In this blog post, he talks about his fundraiser and how you can organise your own.

We saw how hard it is for some parents to cope

My daughter Elara was born 8 weeks early. The doctors and neonatal department soon discovered haemorrhages and believed this happened whilst she was still inside the womb. As time progressed, it was apparent that she had hemiplegia which would affect all her limbs especially her right leg and this was an indicator that she did have cerebral palsy.

A smiling baby in a high chair
Elara smiling and happy

We’re active on social media and on Facebook groups for parents of children with cerebral palsy and we saw how hard it is for some parents to cope. While the challenges facing Elara are comparatively mild others aren’t so lucky and the condition can have a significant impact not just on the children but on their families as well.

Visiting a Scope sleep clinic

My wife visited one of Scope’s sleep clinics. We found it useful and being there confirmed we were doing the right things to get Elara to sleep and we now know what Elara needs. The service was easy to access and was only down the road from us. We gave them a call and luckily there was an available appointment on the day. These services are so vital to helping parents in the same position as us.

I was only meant to do a head shave

A friend of mine did a head shave for charity a few years back and I thought it would be a great event as people always want to see their friend or colleague do something daft.  So, I wanted to help raise awareness and money for Scope.

My target was £250. I was only meant to do a head shave, but I mentioned in passing to one of my colleagues asking how much it would take to get sponsored to shave the beard off.

A man in a Scope tshirt, looking at the camera, holding a phone. He has a bald head and beard.
Peter halfway through his challenge

It then spiralled out of control in a good way, my colleague emailed out that we needed to get to £750 donations to get my beard shaved off. To my surprise this happened.

A man sat on a chair, holding all of his shaved hair and beard in his hands. He is looking glum.
Peter at the end of his challenge

The support from my family and friends was brilliant especially the support from the office.

Just before the shave we were below £600 but, on the day, someone made a large anonymous donation to get to the £750 target.

My Chief Executive Officer came back from sabbatical and increased the donations to reach £1000. I was so overwhelmed by the generosity that everyone showed.

Aside from seeing the generous donations come through for Scope, the most enjoyable part was the shocked faces from people! I was getting lunch just after the shave and people who I worked with walked straight past me.

The support from Scope was great and it was nice to see that the team were keeping in touch to see progress and how things were going. A lot of places will leave you to do it and you won’t hear from them.

It’s such a good feeling knowing you can help

I would absolutely recommend organising an event like this or any type of event for charity. Personally, it’s such a good feeling knowing you can help and the effort you put in gets a tangible result, to invest in the services to help disabled people.

I’m a firm believer of paying it forward to help each other to make this world a better place. It is important to understand that everyone is bound together and can achieve great things.

My target was only £250 however through the generosity of colleagues, family and friends I was able to raise £1085.18 for Scope.

I wouldn’t do anything different, I think I really hit the nail on the head with this event. However, if I was to do it again, I would organise a different type of event. Something like a physical challenge.

We want to support even more families like Peters by funding services like Sleep Right, improving sleep for disabled children. Find out how you can get involved on our website.

Our toolbox of tips that every parent of a disabled child needs daily!

The Ratcliffe Family consists of two dads, Garry and Kyle, and four kids – Haydn, Isobella, Curly and Phoebe – three of whom have a disability. Haydn has cerebral palsy and is blind in one eye, Bella has Downs Syndrome and Curtis has a number of impairments and conditions including cerebral palsy, epilepsy, global developmental delay and he is blind too.

Here Kyle and Gary, write a letter to you to help you in the journey to get a better start in life for your disabled child.

Dear Parent,

We are writing to you as two dads of four awesome kids.  Three of whom have a disability. We wanted to let you know about some of the things we have picked up over the years.  Our toolbox of tips, tricks and attitudes that every parent of a disabled child needs on a daily basis!

Tip one

Our children get to do everything that every little person should do!

Never let anyone tell you that your child “can’t” do something because of their disability.

It’s currently Half Term, and our kids are already exhausted!  It’s only Wednesday and we’ve already been punting on the river in Canterbury, pumpkin picking in Medway, Chinese buffet eating, Leeds Castle exploring and sightseeing in London.

Two adults behind four children in a London Eye Pod. Two children are in wheelchairs and three are wearing hats.
The Ratcliffe Family on the London Eye

Curtis loves the smell of the flowers, Bella loves the variety of food at the Chinese, Haydn enjoys being surrounded by different people to talk to, and Phoebe (our non-disabled daughter) gets the chance to explore and climb.

Each of our children gets something different out of every experience. Our children get to do everything that every little person should do!

Tip two

Warrior parent needs to come out every so often

Be prepared to face a side of you that you might never have seen.  Warrior parent needs to come out every so often.  When your child isn’t getting a good deal, don’t be afraid to challenge people.  Whether in a shop, during a visit to an attraction or a medical service you encounter on a regular basis.

There should never be an apology or excuse made for our children.  We always make sure they are treated equally. Good luck to any shop assistant that thinks it’s okay to show us to the disabled changing facilities in a shop, that is clearly being used as a second stock cupboard. Not acceptable.

Tip three

Start to build up a series of questions ready to challenge systems

What to do when you are at your wits end with frustration.  It will happen, regularly. Usually with people that really should know better.

Start to build up a set of questions. Use flashcards if you need to in the early days. Some questions we have found useful are:

  • “What policy does this ridiculous decision come from?”
  • “What is your complaints procedure?”
  •  “Who is your line manager?”
  • “Explain to me how this decision is in the best interests of my child?”
  • “Do you know the contact details for our local MP?”

These are all useful when challenging systems – systems that were often designed for the majority of the population  – but never designed for the people that need them the most!

Tip four

Appreciate the small things. Celebrate the smallest steps

As we are sitting here, writing this letter to you, we would like to say to you, appreciate the small things.  Celebrate the smallest of steps.  Live in the present and be thankful for every little success.

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Curtis smiling

Yesterday, we took about 50 photos of our son, Curtis, who was having a particularly good day. Not because he had just won a football match, not because he swam a length of the swimming pool. Not even because he managed to tie his shoelaces for the first time. But because he smiled. Yes, that’s right. Curtis smiled yesterday. The most infectious, smiley smile that you could ever imagine. A smile that curled up one side of his face. A smile that said “I’m really happy today, dad”. A smile that made us smile too. It’s not the big things that matter when you have a disabled child. It is the smallest step, the greatest achievements that mean the very best.

Last tip

Worry about the things you can control

Having a disabled child will mean that there are dark days as well as light ones.  But hey, that’s parenthood!  If you have a non-disabled child, you might worry about their friendship groups as they get older. We have worries too, as parents of disabled children. All we would say is, don’t let things worry you that you can’t control.  Worry about the things you can control which is why, right now, we are off outside.  To swing on a swing, slide on a slide, to push some warm hot chocolate through a feeding tube, and hope and pray for one more sunny day.

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The Ratcliffe family enjoying the seaside

Your sincerely

Garry and Kyle Ratcliffe

Now is the Time to be a Disability Gamechanger,  sign our petition calling for a new Minister for Disabled Children and Families.

Appoint the first ever Minister for Disabled Children and Families. This appointment would lead to improved accountability for how laws and policies affecting disabled children and their families are made. A dedicated Minister can strengthen how Government and services like the NHS work together to make sure families receive the right support.

Dear Minister for Disabled Children and Families

Carly is an Autism advocate, consultant and professional speaker. She didn’t receive her Autism diagnosis until she was 32, after two of her daughters were diagnosed. She found it a battle to get the voices of Autistic women heard and in 2008 started to notice a lack of understanding and resources when it came to autism and girls.

In this letter Carly shares her thoughts on why she is supporting our Now is the Time campaign, and how a future Minister for Disabled Children and Families can help disabled children and their families get the best start in life.

Dear future Minister for Disabled Children and Families,

My name is Carly. I am an autism advocate, the mother of autistic daughters, and autistic myself.

Like many British disabled parents, we want our children to have a better tomorrow.

We have the passion and the drive. We won’t stop until all UK children have equity, including our disabled children. We don’t want anybody left behind.

Our task is lifelong. Our resilience is remarkable. Our need for support to help our children live a fulfilling life, is at times desperate.

Talent is everywhere, opportunity isn’t

As an advocate I have the privilege (and it is exactly that) to work for phenomenal British pioneers leading the way in disability equality. Most recently, participation with Right Honourable Lord Holmes on his vital independent review on disabled applicants and public appointments. Lord Holmes so wisely said that, “Talent is everywhere, opportunity isn’t.”

This lack of opportunity for our disabled children fails to recognise the gifts and talents disabled youth have, this lack of recognition could come at a great cost to our country in the long term.

Some of the brightest minds that can serve our country not only reside in well performing schools but also in Special Educational Needs and Disability (SEND) schools.

I have a friend, the acclaimed artist Rachel Gadsden, Rachel has a visual impairment yet in her talks she explains that “you do not need sight to have vision“.

The saying, “The quieter the mouth the louder the mind” means that as assistive technology becomes more sophisticated, the loudest thoughts, minds and perspectives will soon be heard louder than ever before.

Many are left isolated and forgotten

Please visit the family homes where home educated children live.  The children who were “not able enough” to flourish to their full potential in mainstream schools, yet not “disabled enough ” to warrant a SEND educational provision.

There you will find new thinkers, leaders and cyber security experts of tomorrow.  The most creative of artists, inventors and entrepreneurs, are waiting for you to notice them.  They are all missing out on the governments most diverse forward-thinking schemes like Cyber first, aimed to be advertised in schools.

This grey area of education leaves many of our most capable children isolated and forgotten.  They are left without opportunity or support outside their family.  This comes at a cost to our wallet, to our mental health, to our relationships, to our physical health and the NHS. And not to mention the cost to wider society of all that lost opportunity.

Carly writing on a poster at an event all about equality
Carly is an Autism advocate, consultant and professional speaker.

We aren’t asking for pity, we are asking to be heard

We must see disabled children’s abilities and not just their impairments.

We need a minister to work alongside parents, and the existing Minister for Disabled People and Minister for Children to ensure that no grey area is missed. We need you to be concentrating on disabled children alone so that no task is deemed too big, too small, too out of remit to be pursued as a policy priority.

Minister for Disabled Children and Families, we need you to ensure that when any new Disability Act, policy or project is discussed, you are there with a fine-tooth comb.  You need to ensure disabled children are a part of that policy .

At present some policies are too vague to be implemented. Some Acts have been written with adults in mind, and although this is of vital importance, it leaves disabled children behind.

Now is the time

What if parents of disabled children were better understood and work with a Minister as agents of change, respected by professionals and not viewed as “hysterical” or “hard work”? The truth is we aren’t either, we are often just exhausted.

How much talent could be discovered if we supported the most underestimated?

What if we celebrated disability history and the vital contributions disabled people have made to the UK?

What if we had someone like you making it happen? Now is the time to help disabled children and their families get the best start in life.

Yours faithfully

Carly Jones MBE

British Autism Advocate and Mum

Be a Disability Gamechanger and sign our petition calling for a new Minister for Disabled Children and Families.

Things like this stop me from living my life the way I want to

Bal is a post graduate student at Staffordshire University, disability activist, former President of their Student Union and has Generalised Dystomia.

In this blog Bal shares her campaign story to ensure taxi fares charge the same for all and how she helped change the law.

In 2015 I led a campaign to highlight the disgracefully high taxi fares that disabled people often face. It was stunningly successful; the law was changed, and bad practice prosecuted. But since then it appears taxi firms in my home town have blacklisted me.

Since moving out of home and becoming a student, taxi drivers have been a thorn in my side. I soon discovered that I was being charged significantly more for taxi journeys around the city than my non-wheelchair user friends, this moved me to act. I took part in undercover filming with BBC’s Inside Out which highlighted this existing national problem in a regional city setting. As a result of this, the law was changed. I then used this amended law by reporting the driver of a wheelchair accessible taxi to the local council’s Licensing department for refusing to take me to the train station. This driver was then successfully prosecuted and fined by the Magistrates Court.

A victory for wheelchair users

However, for me personally, because I was the public face of the case for the prosecution, not so much. I feel like I have been blacklisted in Stoke.  I find it impossible to book a taxi using my own name, (a task that seems to be easy for my non-disabled friends), with the taxi operators always saying that there are no available wheelchair accessible taxis when I give them my name.

Am I being paranoid? Well, when I wanted to go to the cinema with a mate, I rang to book a taxi; after being told by seven different companies that there were no wheelchair accessible taxis available I asked my friend to use her phone to try and book a taxi under a different name. She rang the first company that I had tried and they sent a vehicle straight away.

This is not a one-off event. Another example since the court case included not being able to attend a friend’s birthday meal. All the taxi companies that I called said that they had no accessible taxis available and, as I was alone, I couldn’t get anyone else to book the taxi for me. This left me with fear of missing out . On a recent night out, I was turned down by 15 taxis, despite using a small manual wheelchair that would fit in any car boot. Eventually after an hour in the cold and rain, a taxi agreed to take us.

Things like this stop me from living my life the way I want to

In a wider context taxi drivers overcharging or refusing to take people like me, prevents wheelchair users from living life with the same level of freedom as non-disabled people. Recently I was quoted £35 by one taxi driver and £10 by another on the same taxi rank, the disparity is shocking and has obvious financial implications. I have previously been quoted £55 for a 1-mile journey after a night out when the going rate for that trip is only £10 for everybody else.

Before I was involved with the court case I used taxis a lot more than I do now because they were reliable and on time and, the flexibility and convenience that they gave me was far preferable to using the bus service. However, since the court case I have had to change the way that I plan my journeys and my social life. I try not to let it stop me doing what I want to do, but in some instances, I simply have to change my plans and stay home because I have no way of getting where I want to be, especially at night. This really infuriates me as I feel I am being targeted.  I know that some people may say that I have brought this on myself, I don’t feel that I should have had to accept being discriminated against for being a wheelchair user.

Of course, I’m not alone in experiencing discrimination when travelling. Disability equality charity Scope have recently found that 40% of disabled people often experience issues or difficulties when travelling by rail in the UK and 25% of disabled people say negative attitudes from other passengers prevent them from using public transport. Although campaigning for equality has had some negative repercussions I will always continue to fight for fair and equal treatment with taxis and in all other aspects of life too.

This is a shout out to all taxi companies in Stoke on Trent, please let me know if you have got any wheelchair taxis that will be willing to take me and my friends and not overcharge us. After all I just want to be treated like everybody else.

We know there is still work to do until all disabled people enjoy equality and fairness, with transport playing a huge part in this.  We all need to work together to change society for the better.

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.

‘We all want to live the lives we choose’

Jameisha talks about the impact of a hidden impairment and how attitudes affect her daily life.

As a young person living with Lupus and a few other hidden impairments, I have had my fair share of challenges confronting attitudes surrounding my conditions. These experiences often come from well-meaning people, but they are a marker of how we need to change as a society to be more understanding and inclusive.

I have become very self-conscious about how people see me as a young person with an invisible impairment. So many thoughts go through my mind. What’s everyone thinking when I sit in the priority seating area? Are people judging me for getting the lift instead of the stairs? Are people staring at me for using the disabled parking space at the supermarket. It got to the point where I wouldn’t take help in fear that I would be judged. Ultimately, the consequences impacted my health.

These thoughts have come from real life experiences

I’ve had comments from people on more than one occasion telling me to get the stairs instead of the lift because I am “so young and healthy.” I once plucked up the courage to ask for a seat in the priority seating area on the train because I couldn’t stand any longer on my bad hip. My request was met with blank stares and lowered heads. It still feels humiliating thinking about that as I write this.

To the left Jameisha's is looking direct at the camera. Half of her face is shown. She is wearing glasses, a headscarf and headphones. To the right, there is half a tube window with the big round sticker on the window which says Priority seating, please consider passengers when using this seat #travelkind

There are also many barriers when it comes to the workplace. Many employers out there do not understand hidden impairments. It’s so frustrating. Part of me trying to live the life I choose involves the ability to work, but I shouldn’t have to sacrifice my health in order to financially support myself. I’ve had numerous jobs where I’ve been transparent about my conditions, but employers still were not able to offer me the support I needed. In fact at one job, my contract was terminated due to a Lupus flare up.

No-one offers me help because they can’t see anything is wrong

I try not to think that people are inherently bad. I think having a visual aid plays a role in that. When dealing with Lupus on a day to day basis, no one offers me any help because they can’t see that anything is wrong. After my hip surgery when I was on crutches, random strangers were bending over backwards to help me. It was a very interesting experience to say the least. At the same time I should add that even with a visual aid like a walking stick, wheelchair or crutches, I have spoken to many people who still face obstacles when it comes to societal attitudes. We still have work to do.

Jameisha's hand outspread and face up, with the Please offer me a seat badge and card. The text on the card says Please offer me a seat, Remember not all disabilities and conditions are visible.

One thing I had to do, to live the life I choose is to change my own attitude

I decided to put my health first. If I need to get the lift, I have to overcome those thoughts that stop me from doing so. I continue to be transparent when applying for jobs and focus my attention one roles that will not cause further harm to my body. I still have trouble asking for a seat on the train, but I’m working on that. The Please Offer Me A Seat badges and signs I have seen on public transport have shown me that there are steps being made to change attitudes in how we treat people with hidden impairments.

We all want to live the lives we choose

That goes for non-disabled and disabled people. Unfortunately, not everyone is able to, and societal attitudes play a part in that. For me, as someone with an invisible impairment, something that will help is shifting the way we think. I definitely feel we are making positive changes, but I think we need to change faster. I hope that with more disabled people speaking out and being visible (whether their conditions are visible or not) we can get to a place where everyone lives the life they choose.

We know there is still work to do until all disabled people enjoy equality and fairness, with digital and assistive technology playing a huge part in this. We all need to work together to change society for the better.

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.

“I can’t live the life I choose without PIP.”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility. She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

Following Scope Chair, Andrew McDonald’s comments on how the benefits process is a ‘hostile environment’, Josie describes her experiences of the PIP process.

I cannot live the life I choose without Personal Independence Payments (PIP).

I need a carer to go out anywhere and, beyond local, basic shops (many of which I can’t access), I need a wheelchair accessible taxi. This carries an extra surcharge of £10 to £20 per trip in most areas.

I pay towards my care and need to provide all materials. Without PIP, I would not be able to even meet my basic bills. This is before you consider anything fun. My bills are so much higher than an average household my size.

Josie, a disabled woman, smiles at the camera
Josie has had a negative experience of the PIP process

You feel on edge all of the time

The whole PIP process is very disjointed. Many would think the Department of Work and Pensions (DWP) and PIP were the same department. No. If you communicate with PIP or the assessors, they don’t share any systems so two calls are needed. When you’re already poorly, the energy to make several calls is a lot. Most days you just have to pick between the most important calls.

You feel on edge all of the time. When I was in hospital, they sent an assessor. Thankfully, he rang the day before so it didn’t count as me not meeting the appointment. Had I missed that call, it would have and I would have been sanctioned.

When I was discharged, I rang them to get a new date. I took a cancellation which meant I didn’t have to wait many stressful weeks. I had one home assessment, but then they lost my file. They rang me and told me that I had to repeat the whole home visit again. This was really stressful.

The assessments are stressful

I’ve had so many assessors tell me that “they understand”. They don’t. They can’t. Their ability to keep a roof over their heads is not dependant on this assessment. Not to mention the reality of living day to day with an illness and disability.

The assessors were scripted. Professional but formal. I found it hugely stressful and can’t imagine how anyone with mental health issues, developmental delay or dementia would cope. I was scared anything I said would be written down differently to what I meant. I was petrified I would have to appeal and a tribunal would happen.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie, who is severely allergic to a long list of different things, wearing her face mask

I’m housebound and allergic to the world. Stress alone could land me in A and E with a life-threatening reaction. This was completely unknown to the assessor when they arrived. It upset me for four months after my discharge. I cried with relief when I got the award letter because the practicalities of me attending a tribunal seemed impossible.

I did not trust the PIP process at all. Despite having Disability Living Allowance (DLA) for eight years, the whole assessment started from scratch. Mother’s maiden name, date of birth, everything. It’s almost like you have never claimed at all.

I felt like I was once again having to prove my illness and disability.

What are your experiences of the PIP process? Share your experiences on our Facebook page or by emailing us at stories@scope.org.uk.

“Education is said to be a ‘stepping stone’, but for disabled people it’s a slippery one”

Kasia talks about how the quality of access support varies greatly from university to university, and the impact this has on being able to live the life you choose. 

Education is said to be “a stepping stone” towards one’s career.  Unfortunately, to a disabled person, it often becomes more of a slippery stone.  There are a few university rankings that are widely available, with those from the Guardian and the Times being the most often quoted.  Sadly, there is no ranking system available that would rate quality of support available to student with access needs.  Far too often disabled students choose a university where it is guaranteed they will receive appropriate support rather than a university with better teaching that can also offer better chances of employment.  The quality of access support varies greatly from university to university.

I myself experienced different levels of support.  They varied from very poor to excellent.

The quality of support I received was very poor

A few years ago, I started a Postgraduate course at one of London’s universities.  I was still sighted at that time.  I then returned a year later as a student with a visual impairment having been diagnosed with a brain tumour too late to prevent my sight loss.

I had to cope with sight impairment while learning access technology and new ways of studying.  I used to rely heavily on my visual memory.  The quality of support I received was very poor.  It was limited to assigning me support workers.  I kept getting the same people despite expressing my dissatisfaction.  I was told by a Disability Support Officer (DSO) on one occasion that a support worker is my eyes and I should know how to use a search engine.  Later on, I was told that the DSO was making faces and rolled her eyes whilst talking to me.

In order to complete my studies, I had to submit a final dissertation.  My supervisor contacted the Disability Department and asked for someone to transcribe audio recordings.  I was assigned one person but when I asked for an additional transcriber, I was told that a meeting was required to establish my support needs, as unfortunately, they were not aware.  That was despite them being told directly by my supervisor what I required.

I ended up making a formal complaint against the DSO.  This improved the quality of her work slightly but unfortunately not for long.  The whole experience was very difficult and challenging.

I consider graduating from that university with a good grade to be the greatest achievement of my life.

More recently I tried to do a Human Resources course at a local college of further education.  The course has a CIPD (Charted Institute of Personnel and Development) accreditation.  The whole course consists of three levels with the most advanced being at a postgraduate level.  I did all that was required of me to be assigned to the right group.  I submitted a case study and filled in all the necessary forms.  It all took time and effort.  I was initially told by their DSO that I will be given access to electronic copies of books that I would require.  However, later on I was told something completely different.  On the top of that, the course leader informed me that she had never had a student that required learning materials electronically.  She had students with sight impairment who were able to access large print.  I certainly wasn’t made feel welcome.  Instead I felt discouraged and disheartened by the whole process and the attitude of the staff in the college.  Suffice to say, I decided not to go ahead with the course.

I will never willingly put myself in this situation again

A few years later I did another course at a different university.  It was a private university.  The experience couldn’t have been more different.  They were fantastic.  They just couldn’t do enough.  All that despite the fact that I wasn’t entitled to Disabled Students Allowance (DSA) funding.  They had a designated librarian who I could contact for any book I required.  She would then write to a respective publisher in order to obtain electronic copies of books.  They organised orientation walks for me in the campus.  They were always there for me whenever I required any support.  They were absolutely brilliant!

At the end of September this year I’m starting a PG Diploma in Media, Campaigning and Social Change at the University of Westminster.  I attended an open day this Summer.  Everything has been made as accessible to me as possible.  This includes the application process.  The course leader put me in touch with a current student who also has a sight impairment.  The student couldn’t be happier with the level of support he received.

It is important to know what to expect.  During my first course after my eye sight had deteriorated, I didn’t know what support I was entitled to.  I didn’t know what to expect.  I didn’t know what to ask for.  It certainly helps to know what access technology is available out there.  You then know what to ask for. Events such as Sight Village  that are organised in a few major cities in the UK are worth visiting.  Attending various events is always beneficial if not to find out about access technology, then to learn about everything else.  You just never know.

Kasia looking at the camera, smiling, wearing access technology glasses

There is no doubt that there should be equal access to education for everyone.  Society can lose out on a lot of talent.

We know there is still work to do until all disabled people enjoy equality and fairness, with digital and assistive technology playing a huge part in this.  We all need to work together to change society for the better.

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.

“This is why I fight to overcome barriers to employment for disabled people.”

Max, a writer and Disability Gamechanger, writes about the challenges he faces finding employment as a person with autism.

I choose to fight for the voices of others on the autistic spectrum. Through my own efforts to find work and my writing, I aim to show that those on the autistic spectrum can play an important role in the workplace and indeed, society.

As someone who has a deep passion for social issues and strongly believes in the concept of society, I want to contribute to society through employment. And yes, I do realise that means paying taxes!

All I need is a bit of patience

Along my personal journey, there have been many positive experiences as well as challenges and people who have believed in me. I recently undertook a placement at a very inclusive and welcoming PR marketing agency in Barry, Wales. Here I was given the patience and understanding to build my confidence and work at my own speed. I am also working part-time with an education technology start-up to help develop kids and adults digital skills.

The main barrier for me in the past, and one which I still sometime face has been interviews. I often struggle to express all my strengths in the pressurised situation that is a job interview, and as a result I feel that employers only see my anxiety.

Though I recognise that verbal communications skills are important in marketing and any other employment sector, I know that once I settle into an environment I can achieve anything I set my mind to! All I need is a bit of patience.

One of the biggest impacts that such barriers have had on me are feelings of isolation and loneliness. I am sure these are feelings which are shared by many others in the disabled community.

A young man smiles with his dog
Max at home with his dog

Everybody has value to add

To achieve progress, I believe there should be a greater focus from employers on what  disabled people can do, not what they may find difficult at first. Just as everyone has their own weaknesses, everybody has value they can add to a team.

Creating an environment where all abilities thrive, enabling a wide range of talent, is key. Similarly, creating interview processes which are flexible and allow this talent to shine, I believe can be a positive step forward.

Take those with autism, for example. We are creative, focused and have attention to detail. These are all positive traits which can be valuable within a team.

By creating more diverse teams, this means that more organisations will have the ability to represent their customers and society. Surely, this is something we can all agree is a good thing.

It is time that we focus on ability, not disability.

Half of disabled people feel excluded from society and many say prejudicial attitudes haven’t improved in decades.

We know there is still work to do until all disabled people enjoy equality and fairness, so we all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so get involved with the campaign today to end this inequality.

“This is how assistive technology is helping me live the life I choose”

A keen campaigner and writer, Raisa uses lots of different assistive technology to help her do day to day tasks. Here, she writes about some of these pieces of technology and how they help her live the life she chooses.

I’m very selective when choosing assistive technology. Of course, everything has its purpose, but if it is no use to me, there’s no point in using it.

For me, because I have the option, I don’t use assistive technology for absolutely everything. I’ve only considered using assistive technology seriously when I started university in 2013.

Because I was doing a Creative and Professional Writing degree, it was clear that there was going to be a lot of writing involved. There was no guarantee that I would be able to type everything up in time, by only using two fingers on the keyboard without a fast typist beside me. I was lucky in the sense that I got quite a lot of help through Disabled Students’ Allowance (DSA) at uni.

I’ve always had the habit of writing nearly everything by hand so I can literally see what I am typing, rather than transferring my thoughts straight onto a computer. I have never been able to do it. The only exception is when I compose emails. But even then, if my email is really long and I’m really exhausted, I would probably end up using some sort of assistive technology.

A woman laughs whilst talking in a group at the Scope for Change residential
Raisa talking to fellow campaigners

Technology has so many uses

I am (literally) using Dragon Naturally Speaking 13 to dictate this post in my bedroom. This version is pretty good. I was first introduced to this software in 2009, when version 9 came out. It was horrendous. No matter how much I tried to train the software to my voice there were too many typos per page. I literally wanted to rip my hair out.

I got Dragon 12 at the beginning of my university course in 2013. Thank God I did. There was just too much to do in so little time! Don’t get me wrong, it still makes mistakes, but they’re so rare that I can live with it now.

Something else I use quite regularly was my Olympus Sonority voice recorder. I used this device to record every single one of my lectures or big public events over the last five years. It’s great that they automatically convert into audio files that work on pretty much any device – so I could listen to them anywhere if I wanted to, either on my phone or laptop. It saves as a compatible file for your memory stick also – bonus!

Assistive technology can help you live the life you choose

A family friend showed me Apple’s voice recognition software and how it worked before I got my first iPhone. I got really excited by this. I wouldn’t use Siri in public, but voice recognition software on my phone has helped me do my most important job these days – dictating and replying to emails! I have a habit of sending really long emails! I don’t have to use my laptop, I just have to hold my phone in my hand and speak.

A woman laughs with another campaigner at Scope for Change
Raisa laughing with another campaigner

One of my really long emails to date, which I wrote by only my right thumb and predicted text (without using voice recognition at all), took me two hours to type. However, if I wrote that same email again using voice recognition software on my phone, it would have only taken me about half an hour. It is also a quick way to make notes in your notes section for reminders.

I personally wouldn’t go as far as using assistive technology to help me with absolutely everything. I don’t want technology to directly take over my life. However, I hope that this post has been helpful in showing how assistive technology can help you to live the life you choose.

We know there is still work to do until all disabled people enjoy equality and fairness, with digital and assistive technology playing a huge part in this. We all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.