Film: Bringing Autism into Museums

In 2012 I had a different career and a different life. My daughter was diagnosed on the autism spectrum and I quit my job to support her. I began to volunteer in museums and write a blog. It was a trip to the Science Museum Early Birds Autism Morning that changed everything.

In the last 6 years I founded Autism in Museums, working outside museums and inside museums to create change. Come and hear about the highs and lows of pushing to make museums accessible for all.

Transcript:

Hello everyone. Yes, I’m Claire Madge. I’m going to be talking about Autism In Museums, and how I’ve made change from outside museums, and inside museums. I’ve realised over the last couple of days that my presentation is really basic, but it was half-term last week, and the kids were off school, and basically it’s a miracle that there’s anything there, so we’re just going to run with it.

Good place to start is in the beginning. These are my three kids. They’ve got used to me taking pictures from behind, because I like to kind of protect them a bit. Two girls and a young boy. This photo’s quite old now. The oldest is 15, the middle one is 11, and the youngest is 8. So really, this will start seven years ago. I was working in a university, the London School of Economics. I had a background in librarianship, and I was working as a research publications officer. If you know you universities, I worked on the Research Excellence Framework, which, oh, very exciting. But it drives funding for universities, so not very exciting, but important.

Unlike most parents with three kids under 10, it’s difficult. You’re balancing things. You’re running backwards and forwards, and it’s hard. And then it started to get harder, and we had problems at home. We were having problems at school with my eldest daughter, and it just got harder and harder. Then after a process of about a year, my eldest daughter was diagnosed with autistic spectrum condition. That’s actually quite a quick period of time, a year, but it felt like a very difficult year for us. I think I was at breaking point. I felt like I’d done a day, before I even got on the train to go to the office, because she was refusing to go to school.

After long conversations with my husband, I decided to quit my job. I’d like to say I was being more pirate, but I think I was just about to have a breakdown, so I quit my job. It was really scary. I’d always worked, never not worked, and I was frightened. I felt like I was leaving my career behind. I had a master’s, I’ve worked hard. I felt like I was saying goodbye to all of that. I thought that I would volunteer one day a week, to keep my sanity. My parents were fantastic. They said, “we’ll pick the kids up.” It was funny, some people really didn’t think it was a good idea that I would go and do worked for free. It was amazing, there was a lot of resistance there. They said, “You’re going to give a whole day up, and not be paid?” And I was like, “Yeah, yeah, I’m going to go and do this,” and I’d love to go and work in the British Museum. I have degree in history, that’s fantastic.

But I knew that my local museum needed help more, so I began working in my local museum. I thought, “You know what? I’m going to create a museum Twitter account. That’s what I’m going to do. I’m going to create a museum blog. I’m going to write about exhibitions, and it’s going to be fantastic, and that would be like a CV for me.” So maybe, eventually, down the line when I get back to work, people say, “What’s this gap?” And I say, “Look, I’ve been doing all this stuff,” so that’s what I am going to do.

I liked this photo. It’s a bit blurry, but you can see my chipped nail varnish, because I thought it’s amazing when you lose something, you suddenly assess what you’ve been doing. And I look back at my career, six years at London School of Economics, six years at the Financial Times, and I thought, “Do you know what? I don’t think I really put myself into those jobs. I don’t think I really did the most I could.” So I thought, “Whatever I do now, I’m just going to put myself into it 100%. I’m going to treat volunteering like a job. I’m just going to really try really, really hard. I don’t care what they want me to do, whether it’s meet and greet, help with education sessions, I’ll do what needs to be done.” I’ll helped with the Heritage Lottery, fun projects. I did outreach. I even took home the costumes, that no one asked me to do, to sew up, because they got ripped, the dress-up costumes.

Then, I didn’t really think about the name of my Twitter account. And now when people go, “What’s your Twitter account?” And I go, “It’s Tincture Museum,” and they go, “tinc what?”. But, I started this Twitter account called Tincture of Museum. I didn’t put my face on it. I didn’t put my name on it. It does have my name on it now. And that worked really well actually, a little bit of mystery, people didn’t know who I was. This account now has nearly 7,000 followers, and it’s it’s been one of my lifelines. I setup the blog, and I setup Twitter and this, yeah, seven years ago. Then what happened next? Absolutely nothing. I did nothing for six months. All those good intentions, like lots of people have, and then I did nothing.

But while I was volunteering at my local museum, I met a chap called Adam Corsini, from the Museum of London, and he was doing an outreach project in Bromley. He had a team of volunteers with him, and I thought, “This looks really good. This looks really interesting.” And he told me about it. He said, “You want to apply, come and apply,” so I did.

I got on this volunteer project in their archive and it’s called, a volunteer inclusion project, and it pulls together people from all walks of life. It’s not just students, it’s not just people wanting to get a museum job. It’s single mothers, people trying to get back into work, people who have mental health problems. We had a guy come out of prison, and it throws these people together. For nine weeks, we did a real job. We repacked archaeology in the archive, things that have been dug up in the 1960s, we put it in new packaging, we made space in the archive, we documented, we took photos of the stuff. It’s funded by the Arts Council, and they give you lectures and talks. It’s a fantastic volunteering inclusion project.

Just by chance, there happened to be archaeology that came from down the road, from where I lived. It was a Roman villa that I didn’t even know was there, and this was fantastic. I just thought, “If I can’t write about this, then I am never going to write about anything,” because I’m holding like Roman glass and looking through history. I challenged myself to write every single week, of those nine weeks, which I did. It was quite hard, and it was kind of putting myself out there. I had about 20 or 30 views on that blog, and it was fantastic. This is exciting.

Oh, I should say, so my daughter was diagnosed, and this is what changed everything. We went to the Science Museum, and they run an early-birds event for autistic families. They open up at half past eight in the morning, they train their staff in autism awareness. They turn down the noise of the interactive. It is a fantastic programme. It’s the first time we ever went there. We only live 20 minutes from London, but we could not visit there on regular times, because it’s too busy, too noisy, and we just couldn’t manage it. I can’t explain to you how important it is to just have this family time, and everything was really hard and difficult. This is my middle daughter, and my youngest son has also now been diagnosed. Going out anywhere is a nightmare, and she misses out. This is just about having family time, and having fun.

That blog had 1,000 in a day, and it’s been read about 8,000 times. It made it obvious to me that families really needed these events, and museum professionals needed to know how to put them on. This is why it’s important. This is the only slide with any facts on it, so take some pictures and share it. 70% of families feel socially isolated. I’m not going to read all of that out, but the most shocking statistic there is, 28% of families have been asked to leave public place because of their autism behaviour. It’s just absolutely shocking. So I though, it’s very easy to tell people what to do, and say, “You should be doing this, and you should be doing that.” I wrote blogs with tips and I tried to help. I thought, what I really need to do is understand how it works in a museum.

I spent four years on the Access Advisory Group at the Horniman Museum. We worked on the World Gallery. This is a co-curated space. I learned a huge amount because our panel was made up of lots of different people with mental health, visual impairment, hearing impairment, and it was listening to everyone that made me see how we can take things for, because it’s not just about one view. What’s good for my family, isn’t necessarily good for everyone else.

All this time I kept blogging, and blogging, and blogging. I was blogging for Impact. My museum where I began was closed down by the local authority, and I wrote a piece for the Guardian. That was a lifeline for me, when I quit my job, and when it went, it was incredibly hard. And so, I thought, “It’s about time I pulled out all this autism stuff. I need to give it its own platform,” so I started autism in museum’s Twitter account and the blog. It allowed me to share resources, let people know what’s going on, On the blog there’s a calendar and I put events up there. I’m just helping, and pushing, and talking about this all the time.

Again, I thought, “That’s not enough. I need to learn a bit more about this.” I sent off these events to a local autism group called CASPA. I sent these family events and they said, “That’s great, that’s great. Those family events are great, but do you know what we really need is something for our young people, who are 16 to 25. They’ve left school, there’s no support, they’re not in work and they are just at home. How can we help them?” I thought, “that volunteer inclusion project saved me.” I went back to Adam and I said, “What about working with team CASPA?” And he said, “Yeah, let’s do that.” So, we run this work experience project for eight people. They came every week. They repackaged archaeology.

At the end of it, they had to do public engagement, which was a massive challenge for them. But every week we did little things to help them improve their social communication skills. We started off by just, everyone went around the room and said what they’d had for breakfast. We started really simply. Everyone came to that last day and did public engagement. One guy was so worried, he didn’t come for two weeks. He sat with me. I said, “Let’s not lay out a tray. Why don’t we give him a workstation and he can just do what he’s been doing every week?” He was so nervous, and then someone came up and spoke to him, and he spoke to them back. Then he looked at me and he went, “I don’t know what I was worried about. That was a piece of piss,” and I went, “yes.” It was fantastic. Oh, I’ve got so much to tell you about. But anyway, we’re going to zip on. So, that was fantastic project.

This is city hall. This is the London Volunteering in Museums Award, and they won an award for best theme, which was fantastic. I also won awards. Look at me. Last year, I won a Museum in Heritage Award. Yes, it does look great on my mantelpiece, but why I’ve put that on there is because every event, every place I go, I tell the importance of autism in museums. I share that story. It puts me in rooms with people. It’s a really important part of what I’ve been doing.

Then, Museum Marathon. Mar Dixon, I can see you. Art Museum Marathon is a fundraising day. We walk to 26 museums in one day. Mar will tell you there was more than 26. I lost count after about three. There were are all these people came along on the day. It’s just a brilliant day. Mar said to me, “I want to raise money for Autism in Museums,” and I was like, “that’s great.” Oh, not a charity. I don’t know what to do with the money. It was really scary. I thought, are people going to really donate? What am I going to do? I don’t know.

The aim was to raise 300 pounds. We raised a 1,230 pounds. Fantastic. Then there’s the challenge of what to do with it, and basically it took me a whole year to make the most of this money. 300 pounds was given to an autistic work experience student. He’s working at shops and museums. It’s going to support him with some training. I’m hoping to go and visit him soon. 700 pounds went on free sensory equipment, that I gave away to museums, fidget toys, things to go in a chill-out area, things to go in a sensory backpack. I gave away small amounts. I gave away eight packages, because I wanted to reach as many people as possible. One of the suppliers gave me a whole package for free, and that was fantastic.

I put a call out on my blog and I said, “Let me know what you’re doing currently. What’s your offer? What do you want to do with this equipment? What training have you got?” But I also asked them, “How can I support you going forwards?” I had 67 museums apply for this, across the whole country, Scotland, Wales, Northern Ireland. I was kind of just overwhelmed with it. Then the easy thing to do would’ve been to take a name out of a hat, and just go, “Yeah, you’re going to get the equipment,” because I didn’t know who to give it to. It’s really important to me to give autistic people a voice. So, I decided to work with this charity called Ambitious About Autism. Their youth panel came, they read all the applications, and they decided we would get the equipment. Huge thanks to Museum of London, because they gave me a meeting room, they gave us free tickets to the exhibition, And here we are on that day.

In one of those pictures, my daughter came along as well, and helps, and that was fantastic for her to see young autistic people working collaboratively. It was a fantastic thing. With the very last part of the money, I thought, “What can I do again?” Again, Mar Dixon, voice ringing in my ears, “Get out of London, do something out of London.” So, I contacted National Museums Liverpool, who run fantastic autism events across all of their eight venues. They embrace change from the top. They work with their charity partners. They offered me a free room. We did free training, about 24, 25 people. One of the Deputy Directors from Liverpool came and did the talk. The charity partner came and did the talk. This was a huge challenge for me. I’d never organised any training, and it was up in Liverpool. Two days before it started, my son got chicken pox and it was just horrendous. And my husband started a new job that week and he was like, “I can’t do it. I can’t help.” He did. He did. That was such a good experience for me.

So, what has this all really led to? I feel like I’m making a difference. These are the places I’ve been working in the last few months, and I have been paid, as well. I’ve been doing all this for free. That’s a separate whole talk, but I’m trying to be more confident in being a freelance, and having trust in what I know. Museum Freelance Network has really helped me with that. I’ve worked with all these people. British Library are running their first autism early opening in August. National Army Museum, I’ve just run their first one. At the weekend, I went to the Hornamin Museum, and for their first one. There was a lady there who said that was the first time they’d ever been, and they would have not been without that event.

I tried to distil the last seven years. I thought, “How has this all come about?” I thought I would do seven years, in seven steps. It’s very convenient. Step one, who needs a big plan? I didn’t have a big. This was not in my head the day I quit work. I was not, “I’m going to be standing in museum next, in seven years talking about autism in museums.” I didn’t have a big plan. But I knew I was going to put myself into it 100%, and if that meant cutting out hundreds of butterflies, then I would do that, and that is what I did.

What I have done though, is I’ve used my passion. It’s tweets like this, “Another successful visit to Natural History Museum London. Without Dawnosours, my eldest son would not be able to access this wonderful museum. Thanks.” There are times when it’s really hard, when my daughter won’t sleep and she’s up at three in the morning, and I think, “Oh my God, why am I doing this?” And it’s things like this. I see the change it’s made in my daughter. Going up to London for regular events, she is flying, she’s doing amazing things, and it’s because of these events, it’s because of having to travel, it’s because of going into big places. We have had phases where she would not leave the house. And I want that for all of these other autism families. That is what I want, and that is what I do, and that is, use your passion. But equally, don’t be too narrow.

Some random photos. I was blogger in residence for a year, at the RAF museum. They won a Heritage Lottery Award, and it was given by Martin Kemp who was in Spandau Ballet. And I was like, “Yeah, I’m having my photo taken with him.” This is Queen Victoria’s morning dress. Yes, she really was that small. That’s not someone laying on the floor. She’s that tiny. This is me getting ready to go into the new tunnels for Crossrail at Canary Wharf. Because this whole time I’ve been blogging, I go to exhibitions. I’ve written 240 blogs, had over a hundred thousand views. It’s not all about autism, but it’s got me in different places, talking to different people. and it has spread the message all the time. To be honest, this is the fun stuff. I love Autism in Museums, but I have that at home, so sometimes it’s nice to just do the crazy stuff. Take risks.

This is from the VNA Undressed Exhibition. There’s a special butt lifting pants, but actually I thought this may look a bit risky, but if you’re wearing that under your dress, no one is going to know. But it’s like what Helen said yesterday, “Taking risks, it’s personal. It can be small.” When I quit my job and I had no confidence, walking into a museum for an exhibition preview, not knowing anyone, felt like a big risk to me. Running that training was a big risk. Sometimes I feel like everything is a big risk. Standing here is a big risk, but you’ve got to do it. Everything good has come out of me taking risks, whether they’re big or small.

Evaluate, and this is obviously, Edvard Munch, from the British Museum, Scream. Yes, you don’t have to have a big plan, but you do have to kind of look at what you’re doing and where you’re going. I have to thank the Museum Association because I applied for their Mentoring For All programme, and I got a mentor for six months, because it was great having all these things going on, but I had so many plates spinning, I didn’t really know where to take things next. Those six months, meeting my mentor once a month, gave me time to think, “Where do I want to go?” This is where thinking about earning money, being a freelancer came in.

I also went for a job in this period, at the museum where I volunteered, and I didn’t get it. I felt like, “I don’t to do this anymore. What’s the point? I’ve worked so hard. I’ve shown as much as I can show and I still can’t get a job,” and I felt like quitting. He gave me the space to talk about that, and he was like, “It’s okay to feel like this, but don’t burn all those bridges.” So, I went for another volunteer job, and I didn’t get that either. I was like, “Oh my God, I just want to quit.” But he talk to me. We chatted about it. Then a role came up with the National Lottery Heritage Fund on their London Committee, and he gave me the confidence to go for that. He gave me some advice, and I got that role.

Now, I can help make decisions with big projects on access, and I needed that time. That evaluation was so key to me, and where I am now. Share what you do. I share all the time. If you know me on Twitter, oh, just all the time, but you’ve got to have fun with it. It’s not always about the big message all the time. This here is LAARC. This was from the volunteering inclusion project at the Museum of London. The archive is actually called the London Archaeological Archive and Research Centre. That is Roman animal bone, and I was just having a lark, but I was tweeting all the time, all the stuff I do, sharing by standing up and putting yourself out of your comfort zone. That is a Museum Showoff, where you get 10 minutes to do stand-up in a pub. It’s better than this because you get to have a point, before, during, after. Makes it a lot, lot easier.

Finally, I know this seems like it’s all about me. Actually, it’s all about you. I would not be here without the people who’ve supported me. Without Adam, you read my blog and went, “That’s really good,” and who gave me opportunity to volunteer, and who, when I went to him with my project, went, “Yes, let’s do it.” I couldn’t have done it without him, without people who challenged me, kick me up the bum. Mar Dixon, who told me when I first met her seven years ago, “You should be talking on stages.” It’s taken me a while, but I’ve got here. Rachel Souhami from Museum Showoff, who said, ” Come and do a talk. Come and do a talk, and I was like, “Yeah, I’ll do it. I’ll do it.” And I kept putting it off and then she went, “Okay, if you’re not going to come and do this talk on Autism In Museums, who is?” And I went, “Oh, okay, I’ll do it. I’m not letting anyone else do it.” But I needed to be shoved and challenged.

The enablers, the people like Jim at Museum Next, who’ve given me a platform, all these people have made the difference. It’s all about you. It’s about everyone in this audience. You may not have your big idea. That is totally fine, but you can be the supporter, you can be the enabler, and you can be the challenger to everyone else. No one works in a vacuum, and everyone here can be those stepping stones, and that’s really important to me to get across.

This picture, it’s the last thing I think I’ll talk about, it’s me holding my daughter’s hand. We’re actually at Tower Bridge, for their first autism opening. I don’t know if you’ve been in Tower Bridge, but they have a glass floor, and we would never have got any of my kids on there, if it had been a normal opening. But because it was empty and the staff are fantastic, and we were there for about 20 minutes, and eventually, eventually, eventually she stepped on this bridge, on it. These little things are just so big, so huge for her. If you go to the Autism in Museums blog, you’ll see another photo of my other two children, lying face-first on this glass floor that is miles above the road. But yeah, little steps make all the difference, so thank you very much.

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