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.

Designing content that puts disabled people and their families first

Scope wants to be the go-to organisation for disability information and support. We’re aiming to reach two million people a year, supporting disabled people and their families on the issues that matter most to them.

We want to make sure that people can access the information and advice they need easily – whether they are a customer of our services, are calling our helpline, or are looking for support and advice on our website.

This has meant re-thinking how we design and deliver our support and advice content. Our new approach has four central principles.

Content design

We design content to help people solve problems. Disabled people and their families are at the heart of our work. We ask them about their information needs and write content to meet those needs. Then we test the content with disabled people and their families and make improvements in response to what we find out.

Joining things up

Our policy team helps us plan content that supports our social change goals. Once the content is written, policy advisers join critique sessions to check and improve content before it’s published. We’ve built a great relationship with the policy team by working like this. And it means that the information and advice we give our customers is consistent with our public influencing work.

Evolution not revolution

We evolved our content design process during a ‘proof of concept’ project with a team of three. We’ve used what we learned to scale up to a team of nine, delivering advice and support content on a much more ambitious scale than Scope has done before. We use Kanban, a workflow management tool, to optimise the flow of work through the process. The Kanban ethos encourages us to carry on evolving and improving the way we work.

Open and transparent

Our processes and policies are written down and open to all. We have a clear content strategy and style guide. We use a shared Trello board to map the progress of each piece of content, which means we can easily spot if something is getting blocked and do something about it. If we see ways to improve how we work, we say so and agree what changes to make.

This is a summary of how we’re evolving the practice of content design to achieve our strategy, Everyday Equality. We’ll share more about how we work and what we’ve learned as our journey continues. Watch out for more posts from our content designers, user researchers and the people we work with.

Visit our employment section to see the first results of Scope’s new way of producing content.

‘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.