All posts by julieannereynolds

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.

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.

Ensuring the next stage of Universal Credit rollout works for disabled people

Universal Credit is a benefit that provides financial support for people on a low income or who are out of work. It replaces a number of so-called “legacy” benefits. 

The Government is about to embark on the next stage of rolling out Universal Credit. It’s vital that there is a smooth transition for disabled people – however, we’re concerned about how this process will work.

We outline the changes we want to see to ensure disabled people do not face financial hardship during the next phase of Universal Credit roll-out.

What is Universal Credit and what is changing?

Universal Credit is a single benefit that replaces six means-tested benefits: Income Support, Income-related Jobseekers Allowance, Income-related Employment and Support Allowance, Housing Benefit, Child Tax Credit and Working Tax Credit.

There are a number of changes to the design and delivery of Universal Credit compared to “legacy” benefits. The benefit is being rolled out gradually, and there are currently 1.2 million claimants of Universal Credit.

Under a process called “managed migration”, all remaining claimants on “legacy” benefits will be moved on to Universal Credit. The regulations determining this process will have to be approved by Parliament before they are implemented.

What needs to change to ensure “managed migration” works for disabled people?

The Government has made a welcome commitment to get one million more disabled people into work by 2027. Universal Credit has a role to play in making this happen by ensuring that people are supported as they move into employment or increase their working hours.

However, there are a number of risks with the current regulations which could leave disabled people without adequate financial support as they move on to Universal Credit. Below are three key changes we want to see to the regulations for “managed migration”.

Ensure disabled people do not face gaps in financial support

Under the proposed regulations, all claimants moving over to Universal Credit will be required to make a new claim for the benefit within a period of one to three months. After this point, payment of “legacy” benefits will come to an end.

We are worried about this change, as we know many disabled people face difficulties with making a claim for Universal Credit. In a survey carried about by the Department for Work and Pensions (DWP), 53 per cent of those with a long-term health condition agreed that they needed more support setting up their claim, compared to 43 per cent of claimants overall.

Whilst the application deadline can be extended, there is a substantial risk that many disabled people could be left without any financial support, if they are unable to make a claim within the allocated time frame. This is particularly worrying as we know disabled people are more likely to experience debt and have fewer savings on average.

We want the Government to ensure payments of legacy benefits continue until a Universal Credit claim has been made successfully, so that disabled people do not face financial hardship as they move on to the benefit.

Improve the use of Universal Support

There is support available to individuals who need extra help in making a claim for Universal Credit. This is called Universal Support.

Whilst this is positive, we are concerned about whether the Government will be able to successfully identify claimants who would benefit from this offer of support, including many disabled people. For instance, disabled people in the Support Group of Employment and Support Allowance generally have limited communication with the DWP, meaning it is less likely that any communication and support needs are recorded.

We want to see the DWP proactively offer this service to all individuals at the start of the “managed migration” process. If somebody does not respond to DWP communications, then this should automatically trigger a referral to Universal Support.

Increase access to transitional protection

Transitional protection is extra money paid to top up someone’s award so they are no worse off when they move on to Universal Credit through “managed migration”.

In order to qualify for this support, an individual must ensure their claim is correct on their first attempt. If their claim is disallowed, then transitional protection will not be applied to any subsequent award.

However, research by the DWP shows that people with a long-term health condition were less likely to have completed their claim in one attempt – 46 per cent of respondents compared to 54 per cent of those without a long-term condition.

This means it is very likely that many disabled people will face barriers meeting the qualifying criteria for transitional protection due to challenges with the application process.

We want the Government to ensure that transitional protection is available for all claimants moving on to Universal Credit, irrespective of whether their initial claim is denied.

What will Scope be doing next?

We’ve been raising our concerns with the Secretary of State for Work and Pensions, as well as Ministers within the DWP. We’ve also been speaking to a number of MPs and Peers.

We will be continuing to campaign to ensure that there is a smooth process for disabled people as they move on to Universal Credit.

What are your experiences of applying for Universal Credit? Share your story by emailing stories@scope.org.uk.

‘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.

Young disabled people share their hopes for equality

Regardless of who we are or where we are from, we must work together to ensure that every member of society has an equal chance to participate in our democracy and to have their say.

Carly Jones MBE hosted an EqualiTeas event at Scope, inviting young disabled people to meet, talk about equality and democracy, eat cake and decorate biscuits! An event championed by UK Parliament, aiming to bring UK communities together to explore what equality means to people.

Carly is an autism advocate who has been tirelessly campaigning for equality for years after her own battle to get a diagnosis.

Here’s Carly’s story.

I asked Scope if they could support a celebration of the “equality of voting rights”, EqualiTeas event at their new Here East offices at Queen Elizabeth Park, Stratford. Here I am talking to the Scope team about the event.

Scope team filming Carly who is sat on a sofa.
Carly being filmed.

My hope in asking Scope and I to deliver a get together, was we would be in a better position to amplify the voices of disabled people in the UK. When Scope said they would love to host this event and provide social media and PR staff, plus camera people and scope story tellers all free of charge, I was elated and so grateful!

We created our idols on gingerbread

Guests from different age ranges, genders and disability, arrived from local and not so local areas. We ate cake, and drank tea. Younger guests decorated gingerbread into whatever their idols or ambitions were, which included an astronaut, a mortician and Phil Marsh from Scope.

A younger guest sat at a table painting gingerbread
A younger guest painting (with icing) their idol onto gingerbread.

Huge EqualiTeas posters were used to sound board our needs and hopes for equality. We debated as a group our answers to such questions as “what does equality means to you?” and “have you ever stood up for equality?”.

Our passion for the subject shone through and we noted our responses on the posters themselves.

Carly sitting on the floor writing answers to questions on to the Equaliteas posters
Carly writing answers to questions on the Equaliteas poster

Why this event is important

The reason Scope and I held this event was to ensure that disabled voices were heard in democracy. To inspire a younger disabled generation to not be afraid to step forward. There are approximately 13.9 million disabled people in the UK. We are an extremely large minority group.

To ensure that no one is left behind, our voices and suggestions must be taken seriously. We must have a seat around the democratic tables to fully represent the UK appropriately.

The group sat on chairs discussing equality.
We are having an in-depth conversation about equality.

Young people would like equality to work

Many wanted shops to be more disability friendly. For some their hope was a fair chance at education. Safeguarding and sex education for Autistic girls was of high importance to many, and more representation from the Black, Asian, Minority Ethnic disabled community. Some wanted to get the job of their dreams because they were talented and they deserved it not just because they fitted a diversity box ticking exercise by an employer.

That in a way surprised me, we are often given the impression that young people of today, disabled or not, have some form of entitlement. To hear a young person not want special treatment but simple equality to work struck me as incredibly articulate.

Cakes with Equaliteas sticks in them in the foreground. Guests are in the background.
Equaliteas cakes

We all had fun

The guests seemed to really have fun. Parents of the younger guests got in touch to say how proud they were of their young person and to give thanks to Scope and myself which of course is incredibly kind and heartwarming.

Check out more of the story and photos on Instagram, watch our film of the event.

By @CarlyJonesMBE

What’s next

Next up is the Global Disability Summit 23 and 24 July again at Here East, Queen Elizabeth Park, Stratford with representatives of Include Me Too (Parmi Dheensa), the Department for International Development, British Council and UK government.

There is often an illusion that when the UK talks disability we do not include our own. This could not be further from the truth. There will be many British disabled advocates and activists participating at the Global Summit for others and our own countries benefit. It’s an absolute honour to be among them and share the voices, wants and needs of others is an absolute pleasure of a duty.

Take part in the conversation at #DisabilitySummit #NowIsTheTime.

If you have a story you’d like to share, get in touch with the stories team.

If you want to get involved in campaigns and make change happen, have a look around our campaigns page and get in touch.