Enterprise Rent-a-Car pledge to be disabled-friendly service and employer

Donna Miller is HR Director at Enterprise Rent-a-Car. Here she explains why the company has backed the recommendations from the Extra Costs Commission report, and pledged to become a disabled-friendly service and employer. 

Photo of Donna Miller, wearing a suit and smilingVirtually all large companies have mission statements that articulate something about their morality and beliefs.

We’re surrounded by brands who want to assure us that they not only provide an excellent service and great value for money, but do so with integrity, equality and inclusivity firmly in mind.

But behind the good intentions and overuse of buzzwords, it seems that there is a gulf between what companies claim to stand for and what they actually deliver to consumers.

The Extra Cost Commission has unveiled that people with disabilities pay an extra £500 a month for goods and services, which seems to be at odds with what companies assert about their ‘inclusive’ business practices. It seems that people with disabilities have to pay a premium to live the same life as others – hardly good value.

Enterprise company cars lined upI believe that Enterprise is different. Like other companies, we also have nice sounding words and phrases that make up our core values. They are at the core of every decision we make and that is why we are trying to make Enterprise a more disabled friendly service provider and employer.

As a service provider, Enterprise is firmly committed to providing disabled people with the same services at the same prices as other customers. We pride ourselves on our award winning customer service, which extends to everyone regardless of race, gender, religion, or disability. Furthermore, we have been taking practical steps to make our offices and branches more accessible where we can, but that’s not toStaff answering phone at Enterprise say that we get it right 100 per cent of the time.

Despite us making progress towards its goal of being the first choice for disabled consumers, we have quite a way to go. It’s a journey that’s made up of many steps, but we are absolutely committed to getting it right.

Serving the disabled community is the right thing to do from a moral perspective, which should be motivation enough for any business. However, treating disabled customers equally could also have some benefits for those companies that get it right.

The Extra Cost Commission has called on disabled consumers to make their collective annual spend of £212 billion heaAccessible carrd. Companies that listen to their disabled customers could find their ‘integrity’ and ‘inclusivity’ result in other well know business terms, such as profit, satisfaction, and loyalty.

I can assure you that Enterprise is listening.

Are you a business that would like to pledge to take on some of the Extra Costs Commission recommendations? We’d love to know. 

Struggling to make ends meet? Help is at hand

David Samson, a Welfare Benefits Specialist at the charity Turn2us. Here he explains how their benefits calculator, which is now hosted on Scope’s website, can help.

“We started to get behind on our bills and dreaded the post arriving. The stress of finances and day to day living was tearing us apart.”

This is how James – one of our users – described his situation before coming to us for help. James is disabled and unable to work, and he was struggling to get by on a low income. He felt confused about what financial support could be available.

As a charity helping people in financial hardship in the UK, we hear from thousands of people like James every day. We know that people can be hit by financial difficulties at any point in their lives for many different reasons such as illness, disability or caring for someone. Many are forced to live in cold homes or go without food as a result, yet there is often low awareness of what support they can claim, or sometimes a reluctance to ask for help.

One of the ways we help people in need is through our benefits calculator. This free and easy-to-use tool tells you what welfare benefits you could be entitled to, how much you may receive and how to make a claim.Woman on her laptop

It calculates entitlement to means-tested benefits including Income-related Employment and Support Allowance and Housing Benefit, and also highlights potential eligibility for non-means benefits such as Disability Living Allowance and Personal Independence Payment. The tool is fully accessible for disabled people, and can be used on a mobile phone. It also links through to the Money Advice Trust’s ‘My Money Steps’ service which provides free debt advice.

Through using the benefits calculator, James managed to make a successful claim for Employment and Support Allowance (ESA), receiving £200 every fortnight. His situation is now more positive and he says: “Things feel more stable now and I’m far less anxious. I feel I can move on with my life and pay the bills.”

In the last financial year, we saw over 940,000 calculations completed on our benefits calculator – a 63% increase on the previous year. As economic difficulties and proposed cuts to welfare continue, the need for help is greater than ever and we expect this rise to continue, which is why Scope and other charities are now hosting it on their website too.

The calculator is continually updated to reflect the latest benefit changes, and has helped more many people to understand their entitlements at an uncertain time.

Woman with dark hair sitting on the sofa in her living room on a laptopHarriet supports her disabled adult son and was worried when his entitlement changed and his benefit was cut. Using the benefits calculator, she identified that he was eligible for additional support at £40 per week and says: “It’s taken a huge worry off of both of us. I’m so relieved my son can keep his financial independence.”

We would urge anyone who is struggling to take a few minutes out of their day to use the calculator to see what support they can claim for themselves or loved ones. Even if you have checked in the past, it is worth doing so again, especially if you have recently experienced a change in your circumstances.

Our research has shown the value of checking entitlements with 85% of households who currently claim benefits telling us that this extra income has helped with their bills, childcare costs and even avoiding debt.

So why not see if you might be eligible for help today? If you need any support with the calculator, you can ring Scope’s helpline on 0808 800 33 33 Monday to Friday, 9am to 5pm, and someone can talk you through it.  

My guide dog knows more tennis venues than Judy Murray

Rosie Pybus is working with the Lawn Tennis Association and Tennis Foundation to give more disabled people the opportunity to try and enjoy tennis.

A while ago, I was playing Two Truths One Lie as an icebreaker. “I have a guide dog, I play tennis and I am blind,” I said, pausing as confusion swept the room. After a few moments, I piped up again that I wasn’t blind, but I did have a guide dog and I did play tennis. So if I’m not blind, I must be sighted… right?

Wrong. Only three per cent of people who are registered blind have no sight at all but, even if I was in that minority group, there would still be pathways and opportunities for me to play and enjoy tennis.

Starting out with tennis

Right up until I reached the age of 19 in 2010, I had no interest in sport and was never captivated or engaged by school sport, so when my friend was adamant that I should play tennis with her, I really wasn’t buying it!

Rosie hitting ballWhen I started out on my journey into sport, I had no idea that I would end up writing this blog and reflecting on the fantastic opportunities that I would not have faced had I not given in and tried tennis twice!

Five years down the line, I have become practically inseparable from my tennis racket, and my guide dog knows the route to more tennis venues in the UK than Judy Murray!

Rosie with the full teamI am very privileged to be involved in tennis, and to have the opportunity to work alongside so many fantastic people on a local, regional, national and international spectrum! The only thing more exhilarating than stepping off the train, bus or metro in Newcastle, York, Leeds, Sheffield or London and telling Kane to “find the tennis club!” is that buzz of excitement when the support I give others allows them to triumph and succeed.

As a player, I love tennis and think that the magic of the sport is its inclusiveness! It is perhaps the only sport where somebody who is visually impaired can play doubles on a team with somebody who is a wheelchair user playing against somebody who is deaf/hearing impaired and somebody who has a learning disability with very few adaptations to the rules and equipment.

Becoming a tennis coach

Rosie with the tennis group on court

Loving tennis so much, I couldn’t stop at playing the game and in 2011 I signed up to my level 1 coaching assistant course at Sunderland Tennis Centre, followed in 2014 by my level 2 course at Leeds Beckett University and a whole host of CPD courses in between. Tennis has given me the confidence to develop myself and now, as a coach, I feel so privileged to play a part in many more people’s tennis journeys, hopefully helping to inspire them to pursue their newfound passion for the inclusive game!

As well as the life-changing confidence that I have developed on court and off, tennis has given me a job, a hobby, a career, lifelong friendships, and the ability to move out into my own flat and build my own life.

Rosie with a tennis trophyI would encourage everyone to try tennis twice, let it intrigue you the first time and captivate you the second and you will truly see the magic that the game has to offer! If this article inspires you to do one thing, please follow me on Twitter and join in the discussion with @DsbltyTennisNE, @BritishTennis and @TennisFndation. Have your say and find out where you can try and love tennis for free local to you #AnyoneForTennis?

Want to discuss your own experiences with Rosie? Join her on our online community now.

Rosie is School Games Project Officer at Tees Valley Sport and Self Employed Coach and Consultant trading as Successful Approach. For further information and to get involved, email SuccessfulApproach@outlook.com or enquiries@tennisfoundation.org.uk

Tips for a good night’s sleep

We are currently running a sleep appeal. Have you or your child ever had problems sleeping? Read this blog for some brilliant tips from our Sleep Practitioners. 

Consistency is key

If your child wakes in the night, return them to bed, tuck them in and say, “It’s night time (name) go to sleep”. Don’t enter into any discussions or negotiations.

Social story

If your child has learning disabilities and has troubles settling or sleeping, especially if they are scared of having bad dreams, try using a social story explaining what dreams are and that nightmares are just bad dreams.

Natural wakings

We all wake naturally four to five times a night. Once we have learned to sleep, we don’t wake fully during these natural wakings. One of the common reasons a child will wake fully is because the conditions have changed – for example,  if you were with them when they fell asleep, then vanished.

Family photo

Try putting a family photo in your child’s room, as that can be comforting for natural night wakings.

Smells like mum

Child sleepingTry putting your own pillow case on your child’s pillow, as the scent will be comforting.

No controlled crying

We don’t advocate controlled crying as an approach as it’s too emotional for parent and child, and only makes your child over stimulated.

Golden hour

There is a ‘golden hour’ before bedtime.  If your child is lying in bed for too long before bedtime, they will not associate bedroom with sleep. If their bedtime routine is too short they will be too awake.

Keep it boring

Children come up with some fantastic distraction techniques to avoid going back to bed at night! If your child asks for a drink, offer water. If they’re thirsty they’ll drink it. If not, they’ll get tired of being given a boring drink after a couple of nights and stop asking.

No vanishing acts

Make sure your child is awake when you kiss goodnight. If you stay while they fall asleep and then sneak out, it will only upset them when they wake naturally in the night and you have vanished.

Start earlier

Children reading a book in bedIf your child is taking a long time to fall asleep, start their bedtime routine earlier, so they associate bed with sleep.

Give it time

It can take two weeks for a child to learn a new behaviour, so consistency is key to whatever approach you take. Parents who say they’ve ‘tried everything’ may not have given each approach long enough.

Sleep diary

It is not uncommon for children with cerebral palsy to wake frequently at night because they become stiff or experience pain, and need repositioning. Using a sleep diary and hypnogram can help you work out when to do it so your child is in a deeper stage of sleep and you don’t fully wake them.

Gradual changes

Disability can be exhausting and many disabled children need extra sleep. As children get older they will need less sleep, so make gradual changes, say around puberty, moving bedtime by 15 minutes every 3 days.

Special teddy

Try keeping a teddy that belongs to you close to you for several days, then allowing your child to look after it over night and return it to you in the morning. This can act as reassurance that you will be there in the morning because you will need your teddy back.

Gradual exit

Mother checking on child sleepingIf your child gets comfort from you being there while he/she goes to sleep at night, try making a gradual exit. Start by sitting on the bed holding their hand with a glove on, removing yourself gradually over 2/3 weeks leaving them with the glove.

Hold off the lavender

Too much lavender can prevent the production of melatonin, so don’t overdo lavender in the bath before bed. Make sure bath is half an hour before bedtime, giving time for your child’s body temperature to drop.

Wind down time

Start preparing your child for sleep an hour before bedtime, turning off the TV, computer etc, and doing some reading or fine motor activities which will help with relaxation and the production of melatonin.

Were these tips helpful? Please donate to our sleep appeal so that more families of disabled children can get the support they need.

For more great tips and ideas, why not see what other parents have tried. Check out our fab new sleep tips section.

Disability Innovations: Talkitt app helps disabled people use their voice

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We hope it will inspire more innovation in the disability field.

What is Talkitt?

Talkitt is a voice to voice app which aims to enable people with motor, speech, and language conditions to communicate freely and easily using their own voice. It works by interpreting an individual’s pronunciation of words into understandable speech. Talkitt recognises the user’s vocal patterns, translates words from any language and then speaks them aloud via an app.

Approximately 1.5% of the population in the western world has some form of difficulty communicating as a result of medical conditions including: Motor Neurone Disease, Cerebral Palsy, Stroke, Brain Damage and Autism. Current communication solutions include using eye and head tracking systems or using other body movements, but none of these enable the user to really communicate in the traditional sense, by using their voice. What makes Talkitt different is that it does not rely on expensive technology, simply a smartphone app and the user’s own voice. Talkitt wants to help increase participation in everyday activities, particularly when out and about and communicating with new people.

What’s behind the idea?

Talkitt’s Chief Executive (CEO) Danny Weissberg came up with the idea in Israel back in 2012 after his grandmother had a stroke that severely impaired her speech. As a software engineer himself, Danny wanted to come up with a solution to help his grandmother. The more he explored the issue and spoke to speech and occupational therapists about it, the more he was convinced that there was a need for this sort of solution.

In 2012 Voiceitt, the company behind Talkitt was launched as a joint venture between software engineers, technology officers and senior Occupational Therapists (OTs) to combine their technology background with the OTs experience and user insight. Inspired by Danny’s grandmother and working to use “technology for good”, Talkitt hopes to break down barriers between disabled people and their communities, and enable them to communicate and participate fully.

How does it actually work?

Talkitt is not your standard speech recognition app. The software works by creating a dictionary of sounds and their meanings, learning each individual’s way of speaking. First the user has to go through the calibration stage. This is when the app learns the user’s speech patterns by getting them to record a selection of set words and phrases dependent on their cognitive ability to create their personal dictionary. This dictionary helps the system to map what a person is saying to enable an accurate and personalised interpretation. Then the user can move on to the recognition stage where the app is able to interpret their individual pronunciation of words. The user speaks a word, it is associated with a word on the software, and the app speaks the interpretation. For example, the app can recognise the pronunciation of “o-ko-la” and the software will translate it to “chocolate”.


In techno terms, the approach is based on robust multi-domain signal processing, and an appropriate pruning of dynamic voice pattern classifier search space. Talkitt uses a smart system which uses machine learning so that the system continues to learn adaptively with the user over time to build and enhance the user’s personal dictionary. As the system is not language dependent but speaker dependent, there are no language restrictions as it works based on pattern recognition software. As it interprets vocal patterns, it can even interpret made up words or phrases such as an autistic child may use to communicate. Talkitt hopes that future developments will also enable the app to be used for degenerative conditions, by recording the user’s own voice to use later.

What’s next for Talkitt?

Talkitt is not yet on the market and is currently under development. They are testing the first release with users, working in partnership with disability charities across the globe. They are also in the process of collecting as many audio recordings as possible to help populate their audio recording database and inform the algorithm they are developing. The aim is to release a version one in early 2016. This will be a basic version of the system with a limited vocabulary for the user’s personal dictionary and will be able to interpret a few calibrated words. Version two is due to be released in 2017 and will incorporate the adaptive learning (without calibration) and continuous speech features as well as having an extended vocabulary.

Once released, Talkitt will run on a ‘freemium model’ with an initial period after the launch where it will be available for anyone to download for free. After that it will run on a monthly subscription fee of $20, around £12. The software can currently run on tablets and smartphones, but eventually they hope to offer it for wearable devices including smart watches and Google Glass. They also hope to integrate it into other devices such as a wearable necklace or wheelchair and browsers. Using this technology that is not currently found in mainstream speech engines to improve existing speech recognition technology. Ultimately, they hope that the data their app will gather in their speech database will help medical research centres and universities to further their research and understanding into neurological and cognitive diseases.

Talkitt has had many successes to date, including running a successful crowdfunding campaign which secured $87,000 (around £55,000) of funding to continue development and testing. They have also won some prestigious awards and competitions, including the Philips Innovation Fellows and Verizon Powerful Answers Competition, the Wall Street Journal Startup Showcase, Deutsche Telekom Innovation Contest and the Orange 4G Innovation Lab, to name but a few!

Why we love it!

What makes Talkitt really special is that unlike existing alternatives, it is a form of alternative communication that is based fully on the user’s voice. Everyone should have the chance to communicate in a natural way, and Talkitt aims to enable traditional communication using a person’s voice in a truly personalised way that’s not offered by text to speech systems. Talkitt will also offer an inexpensive alternative to traditional communication devices, and can cut waiting times as it can be downloaded instantly. The future looks bright for Talkitt, and we’re excited to see how this venture develops!

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

To tell us about a Disability Innovation, please email innovation@scope.org.uk

Win two tickets to Why Not People’s launch event next week!

Why Not People is a members club for disabled people, committed to hosting LIVE music events built for the members and their mates.

To celebrate their launch and the return of our End the Awkward campaign, we’re giving away five pairs of tickets!

The prize

  • Two tickets for the launch event – worth £70! Wednesday 1 July 2015 at Troxy in East London. Doors open at 6:30pm.
  • The gig will feature Tinie Tempah, Aluna George, Flawless, Romesh Ranganathan and the F2 Freestylers! Full details on the Why Not People? website.

How to enter

Terms and conditions

  1. This prize draw is being run by Scope, 6 Market Road, London, N7 9PW.
  2. There is no entry fee or purchase necessary to enter this prize draw.
  3. Enter by signing up to receive emails about our End The Awkward campaign or by completing the share your awkward story form.
  4. Closing date for entries is 28 June 2015. After this date entries to the prize draw will not be counted.
  5. No responsibility can be accepted for entries not received for whatever reason.
  6. Scope reserves the right to cancel or amend the prize draw and these terms and conditions without notice in the event of a catastrophe, war, civil or military disturbance, act of God or any actual or anticipated breach of any applicable law or regulation or any other event outside of the Scope’s control. Entrants will be notified of any changes as soon as possible.
  7. Scope is not responsible for inaccurate prize details supplied to any entrant by any third party connected with this competition.
  8. No cash alternative to the prizes will be offered. The prizes are not transferable. Prizes are subject to availability and we reserve the right to substitute any prize with another of equivalent value without giving notice.
  9. Winners will be chosen at random from all entries received and verified by Scope using random number generator software.
  10. Scope will notify the winner by email about how they can collect their prize on 29 June 2015, Scope will need information on the type of seat you will need before sending you an e-ticket for the event.
  11. Scope’s decision in respect of all matters to do with the prize draw will be final and no correspondence will be entered into.
  12. The prize draw and these terms and conditions are governed by English law and any disputes will be subject to the exclusive jurisdiction of the courts of England.
  13. Any personal data relating to the winner or any other entrants will be used by Scope in accordance with data protection legislation and will not be disclosed to any third parties without the entrant’s prior consent.
  14. This promotion is in no way sponsored, endorsed or administered by, or associated with: Facebook, Twitter or any other social network.

It’s time to show your brain some love!

Most of us try to look after our bodies, but how many of us consider our brain? That’s the message behind the Disabilities Trust’s new awareness campaign, Show your brain some love. Marketing Manager Charlie Price tells us more.

We launched our Show Your Brain Some Love campaign on 18 May, to coincide with the 2015 Brain Injury Awareness Week. One of our divisions is The Brain Injury Rehabilitation Trust (BIRT), a leading charity for brain injury rehabilitation across the UK, so the idea behind the campaign was to encourage people to take care and understand the importance of protecting your brain.

It is estimated that every year more than one million people in the UK will acquire a head injury and, out of those, 11,000 will suffer a severe brain injury. Only 15 per cent of those people will be able to return to work within five years and about 4,500 will need care for the rest of their lives.

Brain injury research shows that men between the ages of 16 and 30 are at the most risk. We’re hoping that, by spreading awareness, more people will take care and understand this as an important issue.

Birt, the character behind the Give your brain some love campaign

We’ve introduced a colourful character, Birt, to share top tips for keeping your brain healthy. It’s a way of making a serious message eye-catching, and much easier to read. The campaign has even changed my own outlook! The best thing for us has been the positive reactions when Birt was unveiled and all the positive comments on social media. We used the hashtag #LoveBirt specifically for the campaign, so we could easily see and measure the use of Birt on social media.

It’s been great to see how wide-reaching the campaign has become. We didn’t just launch it nationally on our website. We also provided campaign packs for 15 of our brain injury services. And they were able to use them in any of the activities they were doing, whether it was cake-baking or bike marathons. It was great to see how everyone made use of the materials. Then they could also see Birt on our website and social media channels, so the range has been really wide, which is great.

There are a few things everyone can do to look after their brain, like ensuring you wear a helmet, eating a balanced diet, learning more, exercise, keeping positive, and other things. If you visit our website and meet Birt, you can find out more.

Read more tips to show your brain some love and learn more about the campaign on The Disabilities Trust website.

“It’s good to see people like you out and about…” #EndTheAwkward goes to the pub

We’ve been filming in a London pub this month for Scope’s End the Awkward campaign, and it got us thinking – pubs and nightclubs are the perfect breeding ground for awkwardness.Four people using filming equipment in a pub

Take a crowded bar and a little alcohol, and we end up doing and saying things we’d never dream of before sundown. If you’re disabled, that can often mean a whole new level of awkward.

We asked you for your stories…

More people were watching us than the gig – Kelly

I always get asked ‘why are you in a wheelchair?’ by strangers in bars. A lot of people assume I’ve had an accident – because I’m confident and outgoing, they can’t believe I’ve always used a wheelchair.

Kelly outside the pub talking to three other people
Kelly filming for our End the Awkward campaign earlier this month

At the Global Festival, my husband and I were backstage dancing, and more people were watching us dance than were watching the actual gig. They kept tapping me and trying to give me high fives.

People come over on a night out and tell me how much respect they have for me. Just because I’m having a night out! It drops a downer on us when we’re having a good night by saying ‘I’m really happy to see you’re going out.’

What’s wrong with you, then? – Ronnie

I have had many people walk up to me at a gig or in a pub and say, ‘What’s wrong with you then?’ Of course, when I reply I have cerebral palsy they sheepishly reply ‘Oh’, and then shuffle away awkwardly…

On a similar occasion in a pub, my friend Tom and I were chatting to a chap across the table from us. Suddenly, he said: ‘Well, it’s good to see people like YOU out and about!’ His girlfriend put her head in her hands and was hoping the ground would swallow her up.

Hope your friend’s okay… – Tom 

Man interviewing young woman on camera
Filming ‘awkward’ interviews in a London pub

Whilst in the university bar I was chatting to a woman; I was leaning against the bar. Things were going well until she asked me to dance on the lower dancefloor, which was down a flight of steps.

When I told her I couldn’t she looked bemused, so I pointed to my wheelchair and offered to dance near the bar. At this point she made an excuse about needing to find her friend who was really drunk, and left.

Some hours later, when I left the club, I saw her at the exit. When she saw me she looked horrified. I just said, ‘I hope your friend is okay…’

Have you had a skiing accident? – Edith

A friend and I visited a bistro in Sloane Square (I’d never been, we’d gone to people watch). She was pushing me in my wheelchair, and I was holding my crutches.

On entering, a rotund man with elbow patches saw me and bellowed ‘Ah! Have you had a skiing accident?’

‘Afraid not,’ I said, ‘I have MS.’ He only faltered for a few seconds before he replied, ‘…That must slow you down, eh?’ and turned back to his wine.

Have you had a similar experience? Send us your awkward stories, and we’ll publish our favourites on our blog and social media.

Find out more about Scope’s End the Awkward campaign.

Disabled people should come together as ‘bold and loud’ consumers

Robin Hindle Fisher is Chair of the Extra Costs Commission, a year-long independent inquiry into the extra costs that disabled people face. As the report is published today, Robin says, “working on the Extra Costs Commission has been emotionally moving – it has helped me realise that I spent the first 54 years of my 55 year life effectively denying that I am disabled.”

Over the past year I have chaired the Extra Costs Commission, an independent body set up to look for market-based ways to relieve some of the extra costs that disabled people face as consequences of living with their disabilities.

The nature of these costs varies enormously across different conditions and from individual to individual. Examples include the costs of specialist equipment, such as wheelchairs, additional clothing, higher transport costs and higher energy bills, due to increased needs for heating caused by immobility.

Young disabled man shoppingThe disability charity Scope estimates that disabled people have to spend an average of around £550 per month on these extra costs, just to be able to live the same lives as others.  This compares with average welfare payments of £360 per month – leaving a substantial gap that disabled people have to finance. It is this gap that we have sought to reduce.

I have  enjoyed my involvement with the Commission enormously and I believe we have set out a number of recommendations that will have significant impact. One of the key recommendations is that disabled people, of whom I am one, should be prepared to be “bold and loud” about their disabilities. The Commission believes that this will help to make the spending power of the disabled sector, the so-called ‘purple pound’, an higher profile consumer phenomenon – and eventually drive down costs.

Disabled woman paying for shoppingI have found this “bold and loud” aspect of the Commission’s work emotionally moving. I have realised that I spent the first 54 years of my life (I’m now 55), effectively denying that I am disabled. What was it that drove me, a moderately ‘successful’ person (in terms of academic attainment, career advancement and material reward), to feel that I could not be seen as being ‘disabled’?

For a long time I assumed the answer was specific to me – maybe the result of my up bringing, that ingrained a strong ‘you are as good as anyone’ ethic in me. It affected me in a whole array of ways – how I dressed, how I strove for badges of conventional success, how I chose to interact with other disabled people – I didn’t.  It certainly affected how I explained my disability to my children wMum and disabled daughter looking at a tablet togatherhen they were young. Fearing that they would be teased, or worse, about their father’s physical deformities (they never were), I described myself as ‘special’, not in an elitist sense, but meaning just ‘different’.

Working on the Commission has helped me understand that I am not unusual. Many disabled people avoid the term, I guess fearing that they will be labelled by society as inferior to the able bodied majority. This denial is completely understandable – when I was growing up in the ‘60s and ‘70s disability was stigmatised and society assumed that you were helpless, and quite possibly hopeless, if you were born or found yourself with physical, let alone mental, health issues.

Although the stigmatisation is massively less pervasive now than it was 30 or 40 years ago, it is still having hidden effects. One of them is the reluctance that many of us still feel to accept the badge of disability. But I now think this reticence is serving us badly. It certainly reduces our collective consumer influence – and thus contributes to the extra costs we face. Hence our call to disabled people to be “bold and loud”.Disabled woman in a wheelchair shopping

Perhaps even more importantly, I believe our reluctance to be identified as ‘disabled’ is perpetuating the very stigma that we seek to avoid. I think we should take our lead from the gay and lesbian community and be prepared to ‘come out’ that we are disabled. I feel that until we do that, disability will remain ‘inferior’ in some people’s minds, ‘special’ in others’, rather than what it should be – just another version of ‘normal’.

Read the Extra Costs Commission report, published today. 

“We searched the world for a miracle, but we found the answer at home”

Guest post from Reza Ataie, a volunteer befriender who runs our Face 2 Face dads’ group in Brighton. He’s sharing his story for Fathers’ Day in support of our Brighton fundraising appeal – we need to raise £120,000 to keep the service running for another three years.

My twins Nikki and Sara, who turned 18 recently, have severe autism and learning difficulties, they also have sleep problems and seizures.

Our children are a handful and a joy. Our life revolves around them, and we can’t imagine not having them for a minute. For our family the glass is always half full, and we’re always happy for the small things.

But when Nikki and Sara were very young, we went through a difficult time.  Even a lot of professionals didn’t know much about autism, and we felt very isolated.

We had a different style of living when the twins were born. I was chief executive of an international company; I travelled a lot and I had a teaching post. I now work in a different role, and I’m very lucky because I can work reduced hours and from home, but my earnings have reduced considerably as a result.

Searching the world for answers

We have videos of Nikki and Sara from their first birthday and they were talking, communicating. But then suddenly, almost overnight, their development turned back.

With the realisation of what was happening to the twins, my wife had to give up her job and eventually I had to stop too. It came to the point where I realised I couldn’t carry on – the sleep deprivation was tremendous.

When they were diagnosed, my wife and I started looking for a miracle. We started doing a lot of research into autism ‘treatment’, and this took hold of our lives.

As a parent, the most difficult thing is to accept and come to terms with your child’s condition. You hope it’s temporary. Autism is a lifelong condition, but we were fighting with every ounce of energy not to accept that.

We travelled a lot – from Russia to America, we went anywhere research was being done.

Finally, when the twins were nearly seven, our fantastic GP called us – he was the only person who knew everything we had been doing. He asked, “Are you tired out? Have you done enough?”

We looked at each other and said “Yes. We’re ready to accept it.”

Getting our lives back together

The first step was to start getting a routine back. We found the right school for the girls, and that was a major turning point. They started settling down and learning in their own ways.

We’ve always done charity work, and I got introduced to a local support group for parents of disabled children. When I started working with them, I realised what a difficult time we’d gone through and what it must still be like for younger parents.

I met Amanda Mortensen, whose daughter Livvy has autism and severe learning difficulties, and she told me about Scope’s Face 2 Face befriending service in Brighton, which she manages.

I did the befriender training course with Scope, and it was fantastic. There were 12 of us, but I was the only dad!

Starting a dads’ group

After the training, Amanda had difficulty finding a dad for me to work with. They tended to be a bit more reserved, and found it difficult to open up.

So I suggested we start a group just for dads. My reasoning was that if it’s difficult to get fathers talking one to one, maybe going to the pub as a group and having a drink would help.

Eight dads showed up for our first meeting in January 2014, and then word spread – we have 32 dads on our contact list now, and we’ve had up to 22 people come to each meeting. A running group has started on Saturdays, and people meet up socially with their families. I’m still amazed about how easy we have found it to talk to each other.

Fathers can feel very isolated – often they feel they can’t talk as freely about their problems. The group gives us a sense of belonging.

Can you support our appeal to keep Brighton’s vital Face 2 Face service running? Find out more about the service and the parents it supports.