Category Archives: Disability Gamechanger

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.

Writer Shaun Pye on exploring issues that affect many parents of disabled children, for BBC’s There She Goes

Shaun Pye is the writer of BBC4’s ‘There She Goes’, and is the dad of a 12-year-old girl with a chromosomal disorder.

In this blog, Shaun writes about exploring issues that affect many parents of disabled children, like him – and why now is the time to join our campaign to make life better for disabled children and their families.

Writing a personal story

In the weeks leading up to the broadcast of There She Goes I was extremely nervous. All TV writers worry about the response from friends, critics and the dreaded internet. But I was particularly worried about what the families of children with learning disabilities would think. I had always emphasised that this was a very personal story, about my family’s experiences with my daughter, and didn’t try to tell any wider story about living with disability. But still – I was terrified of how it would go down, all the same!

BBC4's 'There She Goes'

I didn’t need to worry. We had a screening for a wide range of charities, including Scope, which drew a very positive response. Then in the days after episode 1 went out – wow. The number of people who contacted me, or the production company, or the BBC, or took to social media. Overwhelmingly, support was phenomenal (so huge we haven’t had time yet to thank each person individually).

Almost universally it was from parents or siblings of children, although many now adults, with some form of disability. The message repeated over and over was “finally, a programme on television that tries to show what my life has been like”. Many said that other programmes had dealt with the subject matter but often portrayed the parents as saints dealing with a terrible burden, or portrayed learning disability and autism as some sort of superpower to be marvelled at. It’s neither – it’s something that’s amazing, boring, terrifying, funny, sad, uplifting … did I say boring already?

Some people commented on specifics,  the rituals around dealing with finding hidden poo, the bruises up the arm, the ordeal of getting their child or sibling to go for a walk. But many also talked about the broader issues in the programme, a lot of which chime with Scope’s current campaign.

Two hands high five eachother, and text reads: Now is the time to make life for disabled children and their families better. Scope = Equality for disabled people

Now is the Time

A key statistic is that 41 per cent of parents of disabled children say they were offered no emotional support during or after their child’s diagnosis. I’d say our parents and extended families tried to offer support. However, the theme of episode 1 is that a broad range of lovely people just wanted us to think that everything was okay. And it really wasn’t. This meant we had a lack of the support that we really needed.

Another key statistic is that 25 per cent of parents of disabled children feel more isolated at this time. Without question this happened to us. My wife didn’t want people telling her “nothing is wrong” because she knew there was, and if nothing was wrong with her daughter then by extension something must have been wrong with her.

An illustration of a parent and child, with text that reads: One in four parents of disabled children aged 0-5 became more isolated as a result of their child's diagnosis. Scope = Equality for disabled people

When it became apparent to everyone something was wrong, the last thing my wife wanted to do was see cute, bouncing, “normal” children at Tumbletots and NCT get togethers. She didn’t want the judgement of others, well meaning or not. She withdrew from social interaction. I just drank too much. It’s a source of great shame obviously but it is the truth.

One source of regret I have is that I didn’t try and seek out support earlier, from the likes of Scope and the other charities specialising in this field. I think it was from a sense of pride and a feeling that I would be judged? These weren’t rational and I wish I could tell my younger self just to go and get all the help I could.

Raising awareness

If in some small way ‘There She Goes’ can help raise awareness of these issues, promote a bit more understanding of learning disability and help improve the support networks people have access to, and encourage them to access them then, I’m very pleased.

As I said, this programme only ever tried to tell my story. It was a decision taken wholly because that would give the programme authenticity. But beyond that I didn’t think I had the right to try and import other families’ experiences. And anyway, I thought that my daughter was unique.

She is unique. She’s amazing. But a lot of our experiences it turns out are the same. My family have been truly blown away by the response of parents. It’s good to know you’re not alone.

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.

“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.

“my impairment left me feeling like I was on a deserted island but technology helped me feel at home”

Ajay, Service Desk Team Lead Analyst at Scope talks about his journey from the age of 16 to a working adult, showing how technology has helped him live the life he chooses.

Ajay, wheelchair user, looking at computer screens at work

For me living with an impairment is a bit like being in a relationship, you and your impairment know each other very intimately, you share every moment together, you sleep together, eat together and spend a lot of time getting to know each other very well. Like most relationships you also have conflicts, and both sometimes desire different things. This certainly was the case with my impairment and me.

As I got older my disability became worse and by the time I turned 16 years old I had lost all movement in my hands. From being able to write, play musical instruments or even feed myself, I was left with no movement at all. It was as if my impairment had left me on a deserted island with no hope of getting back home.

Technology changed my life for the better

This is where technology came into effect and really changed my life for the better bringing more control and freedom to it. I remember a time when I was watching TV at home and CNN showed an advert for a new piece of technology that had come out in the US called the Smartnav.

It was a device that would let you control the mouse using your head. It works by sending a signal to a piece of reflective material which you can attach anywhere and when you move that, it would control the mouse. You can click using additional switches or keys on the keyboard. When I learnt about this I immediately contacted the suppliers and purchased it from the US. At the time I could not operate the computer without assistance and if this worked I would feel not completely disabled again.

Ajay, wheelchair user, looking at his work screen on his chair and talking into his microphone

I remember when the first one arrived it was faulty, and I was extremely disappointed. It meant that I had to return it and wait for the next one to arrive which came in a couple of weeks. As soon as I plugged it in and configured it, I was hoping that this would change my life and let me use a computer again. When I started using it, it was amazing! I was able to control the mouse with precision and complete control. It had opened up a new world to me as I was able to use the computer again, and hope of getting off that deserted island had become a possibility again.

The internet was a complete life changer

As I got older, the Internet started taking over people’s lives and more and more Internet Service Providers were providing Internet connectivity to people’s homes. Being able to use the internet was a complete life changer for me also because it meant I could communicate with anyone around the world and I could research and look at whatever I wanted.

The next piece of technology, which completely transformed my life again was a device called the Housemate which I have been using since February this year.

This device with an app installed on your mobile, lets you control devices around your home. Being able to control the TV again was fantastic and I didn’t need to rely on having to ask someone to change channels or access recordings and so on. With this device I can control the TV completely, being able to record, playback recordings, change channels and fully operate my Sky box. Feeling bored was now not an option.

Technology gives me the independence to be part of society

Without technology I don’t think I could really survive in this world, being imprisoned in a body which cannot move can be very depressing at times and it’s something I would not wish anyone to go through. Finding different ways to keep your hopes up and trying to perceive things positively can sometimes be a job in itself and extremely tiring. Technology brings a breath of fresh air to my life, being able to live it the way I want, giving me the independence to be part of society, be employed and share experiences with friends and family.

There is no limit to what technology could bring to disabled people’s lives

What I would really like to see is developers and manufacturers to develop more technology and software to bring more freedom and independence to lives of many disabled people out there, who rely on technology not as a luxury, but as a means to get through life on a daily basis. I think if there was more awareness raised in Information Technology about the needs of disabled people, then there is no limit to what technology could bring to people’s lives and perhaps maybe someday it could even get me off this deserted island that my impairment left me on many years ago.

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.

“Disability is full of compromises and workarounds”

Edith was diagnosed with Multiple Sclerosis when she was 16. As her condition started worsening, it was essential that she found a social care package that met her needs.

In this blog, Edith writes about how finding the right social care package has enabled her to focus on the other important things in life.

Writing about my twice daily care visits feels like trying to describe brushing my teeth, or cutting my nails. It’s boring and I aim not to focus any great deal of time on it, it’s just an essential part of daily life.

A young woman smiles whilst sitting on a sofa, typing on a laptop
Edith sitting on a sofa with her laptop

I use a wheelchair full time, but the ‘book ends’ of my day are especially hard. Lying in bed overnight, my whole body stiffens up and takes a while to stretch out and co-operate. Come evening, fatigue has turned me to jelly.

Add in flare ups, temperature variations and colds or viruses. Each day is a surprise. My carer starts by stretching my legs in bed and helping me to a sitting position. Using a standing frame I transfer to my wheelchair, and in a subsequent set of routines I get dressed and ready for my day. The process is fairly cumbersome and long winded, but we go the fastest we can, totalling around an hour.

Night calls follow a similar set of processes, all made quicker and easier if I’m having a ‘good day’, but following a routine which we know well enough to follow without fuss.

It means I can focus on the rest of my life

My social care calls are crucial. Do I want to have company first thing in the morning? Would I love to get up and make a cup of tea then go back to bed for a few hours? What about those unexpected evenings out where one drink turns into many and you just re-adjust your 12 hour plan accordingly.

The alternative is being bed bound, in some residential home, or relying on my parents (while I can, then what?). So when it works, my social care support enables everything else.

With the essentials of personal care covered, I can focus on the rest of my life, the nights out, holidays, work, credit card bills… just life. To me social care is as necessary a part of my functioning as any of my healthcare, if not more so.

I’m frustrated by the wires I’ve had to untangle to get social care in place, the lack of transparency in funding and set up. It feels more vulnerable than the NHS and prescription meds, yet to me should be treated in the same way.

It’s all a part of my life I’d rather not have to incorporate, but fundamental for me to achieve, do, live or anything else.

Read more from Edith on her blog.

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 join the campaign today to end this inequality.

Will you be a Disability Gamechanger?

Today, Scope launches a new campaign to tackle disability inequality head on. Head of Policy, Campaigns and Public Affairs, James Taylor, tells us why it’s an issue we all need to get behind.

“Negative attitudes, poor access to support or transport, limited opportunities for work.

Disabled people tell us that these things matter. They lead to discrimination, to prejudice and to being seen as an afterthought.”

“The things that people say to you never go away. There have been times where bad attitudes have made me ask, what’s the point?” – Marie

“People with invisible impairments still struggle for people to ‘believe’ their condition is real.

On buses, trains and planes we’re often denied equal service and equal treatment.

When we want to go on a night out, the disabled toilet is often an extra storage cupboard, because we’re not thought of as customers.

Hear from some of the storytellers in this film, highlighting the barriers disabled people face in their day-to-day lives.”

The scale of the issue

“Our latest research shows how many disabled people feel and experience this.

We spoke to disabled people right across Britain to find out about their day-to-day lives – what makes them happy, what angers or frustrates them and what they want to get out of life.

We wanted to understand what equality means to disabled people today, and we wanted to start from what disabled people think and feel, and how important independence is to them.

Overwhelmingly disabled people told us they want to be independent, to have confidence and to be connected through friends, family, colleagues and communities.

Yet for too many disabled people this isn’t the case.”

“I’ve been excluded from social situations or activities due to my condition. People make assumptions about what I am able to do. It’s really frustrating.” – Shani

“Earlier this year, Opinium polled 2,000 disabled adults for Scope and found:

  • 49 per cent of disabled people said they feel excluded by society
  • Just 23 per cent said they felt valued by society
  • On top of this, only 42 per cent of disabled people believe the   UK is a good place for disabled people

These statistics make it obvious that the fight for disability equality is far from over.

Throughout the last century we’ve seen action that has led to dramatic changes in our society, but our research demonstrates that there is still a way to go until all disabled people are able to live the lives they choose free from discrimination and low expectations.

At Scope we want to change this.

Whilst we might have protection in law, at Scope we know there is still a way to go until until all disabled people can enjoy equality.”

You can read more about the research in our report, ‘Independent, Confident, Connected’.

Be a Disability Gamechanger

“We have launched our new campaign calling on all those who want to work with us to show their support for disability equality. It doesn’t matter if you’re a bus driver, a politician, a teacher or an employer. You can all make a difference.”

We can’t do it alone. We know that we are stronger as a movement, as a community and as a force for change, when we work together.

If you, like us, want to end this inequality, join our campaign today.