Tag Archives: disabled people

“We all want to be a part of society don’t we?” Addressing loneliness in disabled people

Yesterday we attended the launch of Sense’s report for the Jo Cox Commission on Loneliness. Their research found that over half of disabled people (53 per cent) say they feel lonely, which rises to 77 per cent for young disabled people. In this blog Scope storyteller and autism advocate, Carly Jones, shares her experiences and ideas for change.

I was really honoured to be invited by Scope to come to this event. As Jo Cox so eloquently put it when she was alive, you think of loneliness and you think of older people, we don’t think of children and young adults. But I know from my personal experience, and the autistic community as a whole, that we are extremely isolated.

My experiences of loneliness

I didn’t get my autism diagnosis until I was 32. You can read more about it in my last blog for Scope. I remember feeling very different at school. I was really anxious. I started realising that I never got invited to birthday parties. I was pretty aware by the time I was in my late 20s that I was autistic, but without a diagnosis it was like being in “no man’s land”.

When I finally got my diagnosis, I filmed it with the help of the National Autistic Society so that no-one else would have to go through this alone, because I felt so alone.

Getting my diagnosis changed things for the better because I could start going to autistic events without feeling like a fraud.  My advocacy work has really helped me find people who understand disability or other autistic people who just get it because they’re autistic too, and you can become friends. So my advocacy work has actually been my social life line. People say “Oh you’re so selfless” and I’m like “No, doing this helps me get out of the house and meet people too!”

Carly smiling with Mel and Juliet from Scope
Carly Jones with Scope staff

Three ideas to address loneliness in disabled people

Better representation in the media: If there’s an autistic person on TV usually it’s a boy who’s about 8-years-old and into trains! It’s really not helping. It’s isolating the thousands of autistic women and girls in the UK who are struggling to have their needs met in everyday society. We need a autistic girl in a big show like Eastenders, who has challenges but strong and sassy.

The education system needs to improve:  Schools need to be more holistic in their approach to difference and really nurture talent. You get awards for being good at maths but what about the artists, the philosophers, the big thinkers, the social entrepreneurs?

I had a really difficult time at school because I struggled with the environment, but teachers just thought I was being naughty. When your needs are not being met it can lead to mental health problems and vulnerability. A lot of the children who come to the events are home educated because they’re not “autistic enough” for a Special Educational Needs (SEN) school but they can’t get the support they need in mainstream school. That can be incredibly isolating too.

More social opportunities: I run a bi-weekly group for young autistic people.  The stereotype is that we never get invited to things so, with the events that I put on, we go to some really cool places and they can invite whoever they like – autistic, disabled, non-disabled. Hopefully their friends will then grow up not seeing autism as this stigmatised thing but thinking “I had an autistic friend in school and we did some really cool things”.

Adults need better groups too. Sometimes you’ll see events for autistic adults and it’s just basically what you would have for a child but for an older audience. You know, we are cool, quite cool and we are adults in our own right and we are responsible people. I think if there were more clubs – which are affordable – there would be more opportunities to meet people.

woman standing in front of a poster holding a magazine
Carly Jones, Autism Advocate

We all want to be a part of society don’t we?

It was fantastic to be at this event. I’ve already got so many emails in my mind that I want to send! Everybody genuinely wanted to hear other people’s stories. The fact that it’s cross party, cross charity, working together, is really fantastic. We all want to be a part of society don’t we? As someone said, it’s not a 10 year solution, it’s more like 40 year solution, but I’m hopeful that we’ll get there.

From 10 July to 13 August, Sense will be leading a coalition of disability organisations, including Scope, to shine a spotlight on the issue of loneliness for disabled people and the steps that we can all take to help tackle it. Head to the website to find out how you can get involved.

If you have a story you would like to share, get in touch with Scope’s stories team. 

Let’s stop disabled people being labelled “unemployable”

My name is Jodi and I am an Employment Adviser at Scope. It’s my job to support disabled young people into employment.

Right now, disabled people are more than twice as likely to be unemployed than non-disabled people, regardless of the skills, experience and expertise they might have. It’s unjust and unfair. With donations like yours we are working to change that.

A lot of things can stand in the way of a disabled person getting on at work – from difficulty travelling to and from work, to confidence issues or a lack of experience and qualifications – up until now.

Thanks to donations of supporters like you, we can work with young disabled people to find the right job opportunity or apprenticeship, help them with CV writing and interview practice and also support them in their jobs once they’re employed.

It’s rewarding work and I love it. But it can also make me sad and angry.

Misunderstanding and prejudice

All too often, I see misunderstanding, prejudice and even bullying in the workplace and a tendency among employers to think of disabled people only in terms of what they can’t do.

It can be frustrating and demoralising for young people to be overlooked or labelled ‘unemployable’ – to feel like the pathway to greater independence and financial stability is getting narrower and narrower.

For a young person struggling with the whole idea of finding a job, having someone to help them navigate the pathway is really important.

Breaking down barriers

I work with disabled people to understand what unique and valuable skills they have to offer. This may involve a volunteering role to build up confidence and self-esteem. In other instances, something like time keeping skills or the right preparation for an interview can make all the difference.

Employment Advisor talking to a disabled customer
Jodi provides one-to-one support for disabled people looking for work, like Nusrat

For employers, having Scope on hand to provide ongoing support is incredibly useful. By helping them to understand and meet accessibility requirements, we quickly break down barriers.

But for wider change we need to do so much more. That’s why we are also working to influence government policy aimed at closing the disability employment gap, as well as running campaigns to educate the public and address common misconceptions about disabled people and what they can and can’t do.

With your help, we can continue to work with disabled people to ensure they have the same opportunities to find fulfilling work and become more independent – both personally and financially.

Thank you so much for your support, it means a lot to me personally to know you are with us. If you can, please make an extra donation today so we can do even more to support disabled people into work.

Our priorities – influencing government in 2017

It already seems that Brexit is set to be the biggest political story of 2017 with the Government expected to trigger Article 50, beginning the formal process of the UK leaving the European Union, by the end of March. We think it is really important that disabled people’s voices are heard as part of this process and vital that progress towards equality made in recent years is not lost.

There will also be plenty of other important moments throughout the year and we will be working hard, with you, to make sure issues which affect disabled people’s lives stay high on the political agenda.

Social Care

Social care was hitting the headlines at the end of 2016, with warnings from the Local Government Association and Care Quality Commission that the system is in crisis. With the Government accepting a long-term solution to care funding needs to be found, social care is likely to remain high on the political agenda in 2017. Some additional funding will enter the system this year through an increase in council tax and from the Better Care Fund, but with a funding gap of £4.6 billion, this won’t provide the long term solution needed to meet rising demand and costs.

Social care is the support disabled people rely on to get up, get dressed, get out, and lead independent lives. Without that support disabled people can become isolated, can’t contribute to society and risk slipping into crisis. That’s why we are campaigning for long-term and adequate funding for care. Over 400,000 working age disabled people rely on social care, and with much of the recent focus on how care affects older people, we will be continuing to raise awareness with decision makers of disabled people as users of social care. 55 per cent of disabled care users tell us the system never supports their independence, so we are campaigning for a care system which supports disabled people to live independently and have choice and control over their care.

Employment

In February the Government’s consultation on disability, health and work will close. We want to see the Government take the opportunity to bring about real reform of the support disabled people receive both in and out of work.

The Government announced in October last year that people with severe conditions will receive continued Employment Support Allowance without needing repeated Work Capability Assessments. This is a welcome change but we want to see the Government go further in 2017 and completely overhaul the Work Capability Assessment so that it identifies the full range of barriers disabled people face to work.

We believe disabled people must be protected from any additional conditions linked to the support they receive. We would campaign against any attempts to impose requirements on disabled people receiving support.

The Government want to hear from disabled people about their experiences of employment support services and at work. Read more about how you can submit evidence to the consultation. Later in the year we are expecting the Government to publish a more detailed plan about how they intend to reform support for disabled people following the consultation, and at Scope we will be pushing for swift action.

Employers also have a key role to play in halving the disability employment gap. 85 per cent of disabled people think employer attitudes haven’t improved over the last four years and more needs to be done to encourage employers to create flexible modern practices. The Government should set out a long-term vision for Disability Confident this year and develop a campaign promoting the business benefits of disability employment.

Despite significant pressure on the Government from MPs from all political parties, the reduction in financial support for new claimants in the Work Related Activity Group of Employment Support Allowance is going ahead in April 2017. We will continue to raise concerns about the harmful impact this will have on disabled people and call on the Government to reserve this decision.

Extra costs

Following the publication of the Extra Costs Commission Progress Review in late 2016, we’ll be continuing to campaign to drive down the extra costs disabled people face and working with businesses in a range of sectors to look at ways they can provide a better service for their disabled customers.

In 2017 we expect government to announce a consultation on consumer and market policy. We’ll be continuing to campaign for markets to work better for disabled people, and for a cross-governmental approach to tackle the range of costs faced by disabled people.

We are also expecting the Government to publish their second independent review into Personal Independence Payments (PIP) which will include recommendations for reform, particularly around the assessment process. We want to see the assessment for PIP more accurately capture the range of extra costs disabled people face from higher energy bills to the need for specialised equipment. Given that disabled people spend an average of £550 a month on disability related costs it is vital that the value of PIP is protected.

In 2017 we want to see long-term funding for social care so that all disabled people who need support can get it, reforms announced that will support more disabled people in employment and to halve the disability employment gap and the protection of financial support for disabled people. We will be working closely with disabled people to continue to raise these issues with the Government.

“All I really wanted was to work, so I could be independent.”

Harrison is just one of thousands of young disabled adults who have struggled to find work. Here he explains about the barriers he faced on his journey to permanent employment. Donate today and support our work with young disabled people.

Have you ever felt really let down? Like there’s no hope? A year ago, that was me. Like so many disabled people, I was constantly being overlooked by potential employers. I kept applying and applying for work. But I kept missing out. At first I didn’t let it get to me. But after a while I got so stressed. I started to think there was no point.

“Employers judged me, without finding out what I could do”

I’ve always been a people person. I’m not shy, I like talking and I’m good at understanding people. I love the theatre and have done some acting and backstage work. So I knew I had lots of skills to offer. But, when employers found out about my learning disability they judged me, without first finding out what I can do. I even started one job, but they let me go with no warning. I didn’t believe in myself at all. I felt really down and useless.

Harrison with his employment advisor, Jo.

Everything changed for me when I met Jo from Scope. She encouraged me to join a work programme where I learnt about everything from how to tell an employer about my impairment to time management skills.

“When I finally got an interview with Morrisons I was so nervous”

I worked on a new CV and learnt how to fill in application forms. My confidence was really low because I’d been rejected for so many jobs. But the support I got made me realise that there are many jobs I can do, which helped improve my confidence a lot.

When I finally got an interview with Morrisons I was so nervous but I had a lot of help with my preparations. I practised and practised answering questions. When the interview day came, I remembered what I was told. And I got the job! I was so happy and excited, I couldn’t wait to tell everyone I knew. The support I got helped me get my job at Morrisons. With your help, other young people can get the right support too, and show employers what they can do.

Harrison working on the checkout at Morrisons.

“My life changed because of the support I had”

I’ve been working at Morrisons for 10 months now. My supervisor helps me remember the things I need to ask customers, like if they have a loyalty card. He says I’ve taken to customer service like a duck to water. I know they want me to succeed here because they do everything they can to support me.

Now I’m earning my own money, I’m saving up to move out from my parents’ house into my own place. It’s great that I can see a future where that happens. I want all employers to be as supportive as mine. My life has changed because of the support I had and now every day when I go to work I feel confident and independent!

Harrison’s story shows how with the right support a young disabled person can get a new start and chance to achieve their dreams.

Donate today and help disabled people like Harrison get in to permanent, sustainable employment.

With your support we can make sure disabled people can get the right support, and show employers what they can do.

#Attenborough90: Why nature should be accessible for all

Ellie is one of our Scope for Change young campaigners. Here she talks about how David Attenborough inspired her to fall in love with nature, and why she believes everyone should have the opportunity to enjoy it. Ellie standing in a corridor, wearing a blue jumper with a dog on it, and smiling

An inspiration

From a young age, I remember waiting in anticipation on a Sunday evening for the latest wildlife programme, narrated by the voice of the natural world, Sir David Attenborough. He’s ensured the BBC have covered a wide diversity of animals from dung beetles to red kites, to snow leopards over the years. This week he turned 90, and the nation has been celebrating by re-visiting many of his iconic TV highlights, such as when he was preened by mountain gorillas in 1979 for Life on Earth.

David Attenborough has inspired many people in this country and the world to stand up and take notice of the animals and plants we share the earth with. As a result, people are more actively involved with local and national wildlife charities, learning about conservation and many have been inspired to work in the industry.

Everyone has a right to enjoy nature

Only a couple of weeks ago, David Attenborough opened Woodberry Wetlands, a new nature reserve owned by the London Wildlife Trust, which is accessible to all. In an interview with BBC news, he talks about the importance of access reserves:

“We are part of it and if we lose contact with the natural world, you lose contact with a great source of pleasure and delight which is your birth right.”

Disappointing experiences

I regularly walk to my local community garden. It’s brimming with wildlife and it’s where I take many photos of toads, grasshoppers and buzzards. My favourite animals are insects, especially butterflies.

Last year I looked into volunteering with my local butterfly conservation charity, as I wanted to learn how to survey species and the different tools used to conserve them. I don’t drive because my cerebral palsy and learning difficulties effect my hand-eye coordination. So I tried to find alternative public transport to get me to the nature reserve, but because I live in such a large county, a lot of the transport isn’t very regular. You have to really plan in advance to make sure you can get home.

In the end, I decided not pursue the role because of the practicalities in getting there and back. It made me feel down because I knew in my heart it was something I really wanted to do, but due to circumstances it wasn’t realistic. It’s a shame there aren’t organisations working with the major environmental and wildlife charities to support more disabled people to get into conservation. I very much doubt I’m the only person with a disability who’s wanted to be involved in this area and been let down.

Getting my ideas together

Though not all has been lost! I’ve had really positive experiences with my local Wildlife Trust. I’ve been involved in various activities, such as getting teenagers interested in getting outside, and supporting primary school children to build insect hotels. At the beginning of this year I was invited along with four other volunteers to be part of Darwin’s Childhood Garden project. We were all asked to contribute something to the project, and I decided to run a workshop for children with disabilities from a local school. We’re now in the process of waiting for funding for it, but in the meantime, I’m wanting to create greater awareness about why nature should be accessible to all.

My campaign to make nature more accessible

‘All for nature and nature for all’ is the name of my campaign. I want to further educate those working in the conservation sector to make sites of natural interest as accessible as possible: providing ramps up to bird hides, having blue badge parking spaces, braille or audio information boards, allowing assistance dogs, and accessible toilets. I’d also love more exclusive workshops that allow disabled people to participate as much everyone else, and having resources such has easy-read, Makaton and BSL signers and accessible transport when needed. Opening up the senses in particular for those with profound and multiple disabilities is so important – and where better to do that than a national park?

I would like to see that nobody is left behind in my campaign. This week, wildlife presenter Chris Packham opened up about his life with Asperger’s. It really highlighted to me that we need to do more, so that many other disabled people feel they can be involved with the natural world.

Ellie would love to hear from disabled people about their experiences at nature and wildlife reserves – the good and bad! Whether you volunteer yourself at your local wildlife park, or have an experience to share from a trip to your local nature reserve, it will really help Ellie to build her campaign. Please leave a comment below. 

Invictus Games: getting ready for a summer of sport!

The Invictus Games start this Sunday, 8 to 12 May.

Prince Harry decided to create The Invictus Games after a visit to the Warrior Games in the USA in 2013. He saw how sport, competition and teamwork was a key driver in supporting injured service personnel to recover, physically and mentally from injuries. ‘Invictus’ means ‘unconquered’.

Prince Harry hugging an Invictus Games competitor

“These Games have shone a spotlight on the ‘unconquerable’ character of service men and women and their families and their ‘Invictus’ spirit. These Games have been about seeing guys sprinting for the finish line and then turning round to clap the last man in. They have been about teammates choosing to cross the line together, not wanting to come second, but not wanting the other guys to either. These Games have shown the very best of the human spirit.” Prince Harry

The games are being hosted in Orlando, Florida this year, with a whole host of celebs and high profile people getting involved – including President and Michelle Obama.

See how Prince Harry responded to their fighting talk:

We’re really looking forward to seeing how the Invictus Games get the general public excited about disabled people competing at a really high level in sport. We feel like this is the perfect warm up to an exciting summer of sport, culminating in the Paralympics in September. We can’t wait!

Check out the Invictus Games TV schedule on the BBC. We’d love to know what you think.

Disabled Artistic Director talks about his work and the importance of inclusion

Robert Softley Gale is an Artistic Director at Glasgow-based theatre company, Birds of Paradise. He’s been acting and working in theatre for 15 years.

For World Theatre Day, he talks about his work and why inclusion is so important.

Getting in to theatre

I was at Glasgow University studying Business Management and I got a phone call from a theatre company in Edinburgh looking to employ disabled actors. At that point I’d never done any performing so I thought there’s no way I’ll get this job. I’d done a bit of amateur theatre but only ever backstage – directing or writing, stuff like that. But I was your typical cocky 21-year-old so I thought I’d give it a go, and I got the job. After that I just kept going.

Creating my own work

The amount of opportunities for disabled actors have come and gone over the years. I felt if I wanted to keep working I had to start creating my own work. I worked with the National Theatre in Scotland on a piece called ‘Girl X’ which did well, and I did a one-man show called ‘If These Spasms Could Speak’ that toured all over the world. When the job at Birds of Paradise came up, I felt ready to go in to making more of my own work and on a bigger scale.

I think there’s much more pressure on disabled artists. If I make something that’s crap, people go “oh he’s disabled, of course it’s crap”, but overall it’s a great challenge.

Making the arts more accessible

There are so many barriers for disabled people to work in the arts. A lot of it is attitudinal. People just don’t think disabled people can do the job. As a disabled actor there will be things you can’t do – but everyone has limitations. Every actor brings what they have to a role.

I worked for the Scottish Arts Council for two years, helping organisations become more accessible. When that role came to an end I set up flip with a colleague, to continue that. When organisations are advertising for roles, for example, where do they advertise? Do they say that they want to employ disabled people? If you don’t say that specifically, a lot of potential disabled employees will presume that the company won’t want them, because that’s been their experience over the years.

It’s also about expanding their networks. A lot of directors in Scotland say “I want to employ disabled actors but I don’t know any”. Well get off your bum and meet some – I can introduce you to about forty! On the whole, organisations want to do better. There’s just a lot of fear around getting it wrong and because of that, some people would rather do nothing.

Why it’s important that the industry is inclusive

I think the visibility of disabled artists is going to change attitudes generally. The fact that there are now disabled characters in soaps is a massive step forward. It normalises disabled people. They’re part of society so they should be part of film, TV, theatre or whatever. Disabled people’s stories haven’t been heard, so by putting us on stage, you’re putting our stories on stage. And that creates more interesting, more dynamic theatre that’s better for everyone.

I imagine a lot of non-disabled people think that if you’re disabled, all you’re ever thinking about is your disability but it’s not the case. It would be so boring if it was! To me, talking about gender or sexuality or politics, any of these things, it’s how we become more human and more real to people. That’s what I try to do with the work I make. Because if non-disabled people can look at us and go “well actually you’re not that different from me”, then we can change their perspective.

Robert’s latest show – Purposeless Movements – has been touring in Scotland.

‘Wendy Hoose’ by Johnny McKnight runs at the Soho Theatre, London from 12 April to 7 May. 

Scope’s online community is a year old today!

“Happy Birthday to us … Happy Birthday to us …” We are celebrating the first anniversary of Scope’s online community, and what a year it’s been!

We launched our new community on 3 July 2014, as a place for people connected by disability to find support, share experiences and swap ideas. We wanted it to be a safe, friendly environment, where disabled people, families and professionals could talk. We also hoped it would become a lively forum for discussing topical issues and subjects that were important to disabled people.

We are pleased to say – one year on – it is all that and more! So, let’s take a look at some of our best bits:

From bed-wetting to sex

Emma holding a sign which says - Desperate for a good night's sleep? Ask me anythingWe’ve had several guest experts dropping into the community to answer your questions over the past year. In September, we invited two senior sleep advisors from Scope, who were literally inundated with posts. You can see some of the fantastic tips and advice they had to offer here.

This was closely followed by a Q&A from two bed-wetting advisors from ERIC (Education & Resources for Improving Childhood Continence), which was also very popular.Then we had two “non-expert sexperts” – journalist and broadcaster Mik Scarlet and Emily Yates from Enhance the UK’s Love Lounge, who joined us for a lively Q&A about sex and relationships.

Other popular discussions were hosted by Robert Pearce from Active Nation, who came in to talk about keeping fit, and Kat Dunn from Mind, who answered questions about mental health.People in wheelchairs doing a keep fit class Plus, we had a wonderful team of youth and community workers from Carers Trust hosting a chat about young carers, and a really useful Q&A about employment support for disabled people, led by Tracy Abbott from the Business Disability Forum and our very own pre-employment advisor, Michelle Parkes.

A warm welcome

In addition to our visiting experts, we are fortunate to have a number of regular community advisors, answering your questions in their specific area of expertise. They cover a range of specialisms, from speech and language therapy to assistive technology.

Woman with blonde hair sitting at a desk, looking at her smartphoneOver the past year, we have recruited several new advisors, including Debbie from Scope Helpline, who answers questions on housing and independent living, Richard Lamplough, who is our new employment advisor and  Michelle a Scope pre-employment advisor.

Plus, of course our wonderful community champions, who welcome new members and make them feel at home. Our community champions come from all walks of life – some are parents, some are professionals and some are disabled people. They have all volunteered their time to make sure the community is a safe, supportive place to be.

Let’s have a heated debate!

The community has also played host to some lively discussions in its first year, most notably after Lucy Britton’s blog about hidden disability. Sam CleasbyIt’s a topic that’s clearly dear to a lot of people’s hearts because when Sam Cleasby followed it up with a blog about her #MoreThanMeetsTheEye campaign it got people talking all over again. And when our very own community champion, Hannah Postgate blogged about being a working mother, it went straight to the top of our most-read blogs.

Here’s a tip

One of the most popular features on the online community is our dedicated tips section. Here you can search for tips on just about everything, from travel to technology. All the tips have been contributed by disabled people, parents and professionals, and new tips come in regularly.Lightbulb illustration

Our tips have featured far and wide, appearing in everything from The Guardian and Money Saving Expert to NHS Choices, and The School Run.

Over the past year, we’ve added several new tips sections, including Pregnancy and Parenthood, Dating and Sex, Employment, Employing a PA or Carer and Health and Fitness. We’d love to hear your’s too, so please do pass them on!

We love our new online community so much, we’ve even made a film about it! You can see our community film below. 

Why not join us for a slice of virtual birthday cake on the online community today! 

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. 

“We’re all part of a community, both on and offline.”

Continuing our celebration of Volunteers’ Week, we talk to Niki Michael who volunteers for Scope’s online community. Niki is mum to 10-year old Maria, who has Dystonic Quadraplegia, as well as two younger children, aged 7 and 5. Here she talks about what motivates her to volunteer and why she enjoys it.

When my daughter was first diagnosed, the Scope forum – as it was then – was a great source of information and support for me. Ten years’ later, when I found out Scope was launching an online community, I wanted to be a part of it, as I felt might have something useful to give back.

Being a ‘community champion’ involves welcoming new members, keeping an eye on conversations that I might be able to contribute to and promoting the online community to people who may not be aware of it. I log in a couple of times a week, and reply to posts on topics ranging from education to medication. They’re always quite varied!

Maria-blog-4
Niki and her daughter Maria

My daughter is about to go into a mainstream secondary school. She uses a wheelchair and a communication aid, so I’m happy to offer any insights I’ve gained through raising her and championing her rights.

We all have something to contribute

I think it’s really important for families of disabled children to look out for one another, support each other and impart their knowledge. Parents on the community understand completely the stresses and challenges of raising a child with complex needs.

For me, being able to support other parents is incredibly rewarding, and introducing new people to the community – knowing it will be a great resource for them – is great.

We don’t live in isolation, we are all part of a bigger community, both on and off line, and if we want that community to be more tolerant, compassionate and fair to disabled people, then we all have a responsibility to be part of changing it. Volunteering your time for something you feel passionate about is a great of doing that.

My experience as a community champion has shown me that collectively we are stronger , and we all have something valuable to contribute. The community is a really positive space. Even when someone is struggling, the responses from others are always solution-based, which is really important. When you ‘re having a bad day, having someone there to lift you up emotionally or with really solid advice may be just what you need.

You can see Niki in our online community here.

Meet our other community champions and find out more about Scope’s online community.