From the chapter ‘Children society fails most‘
Katie Hollier, Volunteer and worker at Mencap
Ciara Lawrence, Volunteer and worker at Mencap
John Phillips MBE, Volunteer and worker at Mencap
The three of us have different life experiences. Yet our journeys have overlapped; we’ve worked together over the last 20 years, and agree that the experience has taught us one lesson above all others: inclusion matters and benefits everyone.
Many children do not have a good start in life; however, people with learning disabilities are more likely to have a poor start. This is for a number of reasons, including bullying, poverty and lack of appropriate support. These problems are defined as Adverse Childhood Experiences (ACEs) that have a life-long impact as you grow up. Once more than one of these affects a child, the effect can be cumulative.
Ciara and John have experienced at least one of these, and know what it feels like to want to fight your way out and how important it is to have the support there to help you when you try. Katie also has experienced the benefit of support at times in her life to enable her to achieve so much more than she would have without it.
For us, doing things inclusively is not about lowering standards but raising them higher together. We challenge the idea that vulnerable and disadvantaged children necessarily take up more resources and deliver less back.
The analogy we often use is of a successful hiking team. It puts its slowest member at the front. It’s hard to do this under pressure (as memories of Duke of Edinburgh Award teenage expeditions flood back!), but it pays off. A team cannot come in without the last member, so put them at the front where they are supported and the whole team will come in faster.
Here’s our perspectives. …
John’s story
I have a learning disability. I have also been volunteering for over 30 years. I was a trustee of Mencap, the UK’s largest learning disability charity, for nine years, and am a founder member of the Voices Council that leads Mencap’s strategic development.
I grew up in a slum area of Birmingham with my mother and a series of three abusive, alcoholic stepfathers, one of whom tried to stab me. I was stealing food for the family as a nine-year-old and got placed in a Secure Unit. I was then moved to a residential home, which was even worse. There was a mistake on my birth certificate and I started work in a factory when I was 13. I have never learned to read or write, so I have dictated my contribution to this essay. As a child, my outlook was not good.
One day, as a young man, I saw a person struggling with what he was being told in the job centre. I stepped in, told the job centre employee that it was clear that the person was not responding, and I supported that person. From that day I have never looked back supporting people with learning disabilities, like myself.
In my 20s I was moved to the Isle of Wight. I hated it, but it turned out to be a good thing! I brought up two children for three years on my own and had to do many jobs: cleaner, lollipop man, dinner man, anything I could find during school hours.
Following my second marriage, I fostered 83 children and set up John’s Club, a social club for people with learning disabilities.
I now have two children and eight grandchildren. There is autism and learning disability in my family, but there is also a care worker and a criminal psychologist, and I have been honoured with an MBE. Me, one man from an abusive background, has positively impacted over 95 children’s lives – and many more indirectly.
I believe volunteering has helped me to help others. I volunteer because it is two-way. It gives me skills, confidence and a way to look at my own learning difficulties. It’s improved the way I see myself. It’s given me far more than I have given it. It makes me feel valuable, valued and included. I know I am helpful to others.
Ciara’s story
I went to a mainstream school followed by a special school. When I left the mainstream school I remember my teacher saying, ‘You’ll never do anything. Go to that special place’. However, I was also often told my learning disability was ‘too mild’.
I gained five GCSEs, completed a GNVQ in Leisure and Hospitality, and started work in a paid role at Mencap 22 years ago, which has helped me to believe in myself. At first my mum had to be my coach and support worker when I often just wanted her to be my mum; now I have created a wider support network, including my husband, work colleagues and friends.
I am currently fifth in the Shaw Trust Power Disability 500,[i] have worked with The Eve Appeal on their Get Lippy campaign, and have many volunteering roles. My mission in life, through my volunteering and job, is to let others know to raise their voices and be heard. There are so many times when people assume they cannot do things. I stand as a person who shows that you can. Learning disability should not stop you from taking part and being included in every conversation. I am so proud to have got married, have my own home and career, and be helping others to achieve that. I am part of my community.
Katie’s story
My experience of inclusion came from Oxford Mencap. Each summer a group of young volunteers, most with no experience of learning disability, train, in a day, to care for vulnerable people. At the end of my intense training session I was overwhelmed and nervous. Four hours into meeting the guests I would be caring for I realised I could do the job, and at the end of the week was delighted to have achieved an amazing goal of giving someone the holiday of a lifetime. I learned an array of skills for life, teamwork, care, leadership – and took these skills into my future work as others did with me, into areas such as law, accountancy, medicine, social care, hospitality and teaching. For me it was a revelation – I found a community with a common goal supporting each other by providing for those who most need support.
Since then I’ve been part of Mencap for over 30 years running holidays in Oxfordshire, each year taking over 70 people away, raising £40,000 and recruiting 100 volunteers.
This experience, set up to help others, has helped me immensely in my life, and I’ve seen, first hand, that inclusion is win/win/win; for the people who benefit, for the people who volunteer and for their communities. It can create amazing experiences and improve the well-being of all.
So what?
So why do three random people’s experiences matter for children? It seems that success in the UK’s education system favours children who are academic and well provided for.[ii] In rewarding individual academic and sporting success, we can counter-intuitively lose what it takes to create successful communities. We marginalise and leave unsupported huge numbers of people – whether they are neurodiverse, have a learning disability, a learning need, a disability or social disadvantage. Up to one in three children.
Yet there are also over 169,000 registered charities in the UK, one charity per 400 people![iii] Which in itself proves our point! It shows that as a society we have the desire for personal agency at every level – a desire to connect to cause and create change.
Many successful schools demonstrate this personal agency as well. You can feel it as you walk into them that community and inclusion are at the heart of what good schools know they really achieve. It rings out in things like their non-core activities – artwork, drama, values, trips, mealtimes, well-being … and kids on open days who give you a tour of the broom cupboard!
There is, however, a structural and educational piece of work to be done around helping us all to organise, scale, start earlier and include everyone. A determined government focused on the benefits of inclusion could begin to create this.
Because government sets the regulation, the curricula and the budgets, it can start to encourage more structural inclusion, starting with the youngest in society, in volunteering and education through:
Educational change:
- Changing attitudes through education. As Ciara put it, ‘I would go in a minibus to every school and tell them what it’s like to have a learning disability and stop the bullying.’
- Co-producing a review of education from the point of view of those who need to be included. John says, ‘Praise. Let children feel good. Encourage them to do things with their hands. Practical things. Make sure they feel education gets them a job and a home. Take away the emphasis on reading and writing. It is important, but I’ve done okay without it. Teach things like cooking and how to change a plug.’
Volunteering:
- Ensuring children can volunteer, it gives them confidence and enables them to try things that may lead to work. Use volunteering as a way to work with meaningful purpose.
- Bringing to the front lived experience, the experience of people with disadvantages: ‘Lived experience is important, but even when action is taken, people with lived experience are often viewed more as ‘informants’ than change-makers and leaders of change.’[iv]
Thought leadership:
- The most important factor in helping people to give time or money is connection to cause. Look at ways to introduce young people to causes they care about.
- Encouraging successful charities to merge, scale and work together to bring young people in to volunteer. Find the ones open to change and enable them to scale while staying true to local roots. Perhaps the equivalent of the current R&D (Research and Development) Innovation funds, but for volunteering awards and qualifications?
- Reporting and sharing. Putting together more events and awards to highlight good practice across the UK and internationally.
Inclusion is important. It benefits everyone. The three of us have seen this through knowing each other over many years. Research and evidence suggest it benefits all. As the traditional African proverb says: ‘If you want to go quickly, go alone. If you want to go far, go all together.’ We all want to go far, wherever we start from, and with innovative, inclusive policies, a government could make it possible.
Notes
[i] The Shaw Trust (2021) ‘Shaw Trust Disability Power 100 2021 reveals most influential disabled people in the UK’, www.shawtrust.org.uk/shaw-trust-disability-power-100-2021-reveals-most-influential-disabled-people-in-the-uk
[ii] Farquharson, C., McNally, S. and Tahir, I. (2022) Education inequalities (The IFS Deaton Review), London: Institute for Fiscal Studies, https://ifs.org.uk/inequality/education-inequalities
[iii] The Charity Commission (2022) Charity Commission Annual Report and Accounts 2021 to 2022, www.gov.uk/government/publications/charity-commission-annual-report-and-accounts-2021-to-2022
[iv] Sandhu, B. (2017) The Value of Lived Experience in Social Change: The Need for Leadership and Organisational Development in the Social Sector, The Lived Experience, July, www.thelivedexperience.org/wp-content/uploads/2017/07/The-Lived-Experience-Baljeet-Sandhu-VLE-summary-web-ok-2.pdf