Why is disability an issue that is still fighting to be heard?

It’s 1am on Friday morning and I’m in an ambulance hurtling towards Accident & Emergency with my daughter fighting for …
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Samantha Bowen
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It’s 1am on Friday morning and I’m in an ambulance hurtling towards Accident & Emergency with my daughter fighting for her life in the back. Another seizure and this time it’s bad. This isn’t our first trip in an ambulance, but there is a distinct point during our journey when I fear it will be our last. Fortunately, we get lucky and return home later that weekend, utterly drained.
What has this got to do with museums, you ask? Well, during the fog of trauma I had a moment of absolute clarity. I campaign for Special Educational Needs and Disability (SEND) inclusion, not just for SEND children but for their families. 
I feel passionately that museums play an important role in reflecting society and are safe places for visitors to explore, engage and interact with subjects that help shape them as individuals. Libraries, cinemas, theatres – they all provide something, but museums offer an opportunity to step into different worlds, time and again. 
You can return to familiar ground in a museum and build something of your own relationship with it. At the heart of this is emotion and shared experience and, perhaps most significantly, memory making. 
Sat in that eerily quiet ambulance, the memories – not of my life but of my daughter’s – flashed through my mind. It is a brutal fact that some children with SEND (possibly my own) won’t live out their childhood years. My daughter’s special needs school has a garden of remembrance and a large book in the foyer that honours students who have died. 
Memory making within a limited lifetime is a whole other ball game. Every encounter, positive experience and engagement with new and exciting things is 100 percent locked in the vault. Yet there are so few places that can offer this to a family like mine. 
Arts Council England just released its new 10-year plan, #Lets Create. It identifies four investment principles, including ‘Inclusivity and Relevance,’ which highlights disability as a key area. Ten years on from the Equality Act, why is this still something we need as a sector to be told? Why is disability still an issue that’s fighting to be heard and seen?
How have groups from other protected characteristics been more successful at getting inclusion in the sector? What can we learn from their activism that goes beyond zeitgeist and embeds new behaviour and best practice at the core of our work? 
Despite decades of campaigning by individuals and organisations, it’s as if addressing the needs of disability and SEND are regarded as a chore rather than an opportunity to be some of the most powerful, meaningful work a museum does. 
The business case alone testifies that  it is an audience worth investing in – 20% of the UK population are disabled, making disability the UK’s largest protected characteristic; 8% of the UK child population have SEND. 
The annual UK spend of disabled people (this is termed the Purple Pound) is worth £249bn; the total inclusive tourism market is worth over £12bn. One in every 260 people in the UK needs a Changing Place Toilet.
It would be easy to dismiss me as one SEND parent chewing on sour grapes. But I want to know what it is going to take to make the sector as a whole act responsibly towards disabled visitors, staff and business partners. 
When are we going to create a joint movement that sweeps everyone into action, and who is going to take the lead? I look forward to hearing the answers to these and other questions that need to be asked.
Samantha Bowen

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