My youngest sister has a talent for baking, an ambition to see her artwork widely displayed, an infectious giggle and the learning disability fragile X syndrome.

Characteristics, abilities and aspirations come first, diagnosis and lifelong support needs second. Or at least that is how 28-year-old Raana’s friends, family and social care support staff would describe her.

However, mention the term learning disability to most people, and the focus is on the personal deficit, not the personality. There are around 1.5 million learning disabled people in the UK, from people with profound and multiple learning disabilities, to individuals like my sister who are labelled with what is called a moderate learning disability.

As her sibling and as a social affairs journalist, I know personally and professionally that society has inflexible and negative attitudes towards people like my sister. Generally either pitied or patronised, they are regarded as somehow devoid of the individual qualities, hopes, dreams and quirks that make us all human. How often, for example, you directly hear from someone with a learning disability in his or her own words?

That is why I am developing the book Made Possible, a crowdfunded collection of essays on success by high achieving people with learning disabilities.

The book challenges longstanding misconceptions by presenting the experiences of a range of successful people with expertise in fields including film, theatre, television, music, art and campaigning. And they happen to have a learning disability. In Made Possible, they describe how they feel about their success and how they have achieved it with talent, grit, chance, family or social care support – and how young people can replicate such success.

Support for Made Possible has been incredible, reflecting demand for this sort of publication. The crowdfunding campaign reached the 100% milestone just six weeks after its launch (and the book is now available to pre-order). The book’s patrons, all of whom will be listed in the back of every edition as a supporter, include self-advocates, campaigners, care providers, family members and people keen on equality, human rights or simply on reading interesting life stories.

Why do we need this book? Because Made Possible focuses on people’s talents and futures at a time when austerity and welfare reform is doing the exact opposite by undermining people’s independence and potential. In addition, national regulator, the Care Quality Commission, has just issued a stark warning about the state of health and social care sectors (there are, for example, 129,000 people aged 18 to 64 who use local authority learning disability support services in England).

Take also Theresa May’s excruciating encounter with a learning disabled voter before the general election. Confronted in Oxfordshire by a woman asking what she was doing to help people with learning disabilities affected by cuts, May responded by saying the government has “a lot of plans for people with mental health in particular”. The episode underlined the impact of austerity on learning disabled people and exposed how confusion about learning disability extends to the UK head of government. The exchange was also notable as a rare moment when the public – and politicians – heard directly from someone with a learning disability.

People with learning disabilities also face inequalities in work. In the UK, just 6% of people with a learning disability who are known to social care services are in paid work, compared with 74% of non-disabled people. But around 65% of learning disabled people want paid work (pdf) but have been unable to get a job.

The inequality extends to health. It is a shocking fact that people with a learning disability are dying because they do not receive the same quality of care as other people. And while many NHS long-stay hospitals closed in the 1980s as community-based living for those with learning disabilities was heralded as best practice, people are still warehoused in inappropriate, institutionalised housing. Despite the government’s promise to move people out of such units after BBC’s Panorama exposed abuse at the privately-run Winterbourne View six years ago, thousands of people with learning disabilities are still locked away in what are called assessment and treatment units.

Made Possible also reflects the growth of activism and self-advocacy among individuals and families determined to champion the rights of learning disabled people and reveal their true, but overlooked, potential.

It is a book about equality and inclusion, with a clear, simple argument at its core – a person with a learning disability is a person first. Or as the human rights campaigner Shaun Webster once told me: “I have a learning disability, but it doesn’t define me.”

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