Readjusting the world – life with a disabled child

13 February 2020

UPDATE, 13 MARCH 2020: Following a conversation with Tate, we are sorry to let you know that I Am At Tate Exchange Festival will not be going ahead as planned from 24th – 28th March.

This has been a very difficult decision to make, and we understand this will be a huge disappointment for everyone involved, however, in light of recent developments and updated government guidance around Coronavirus, our primary concern is for the welfare of festival attendees.

We would like to thank all of the students, teachers and partners involved in planning the festival for all of their hard work, and everyone who has booked a place at a festival event for their interest.

We will be in conversation with the Tate Exchange team to discuss how and when we can revisit the programme at a later point, and will keep you updated about this.

Sobia Khan is one of the artists working with us on I Am At Tate Exchange Festival this year – our unique celebration of creativity with D/deaf, disabled and neurodiverse young people, taking place at Tate Modern from 24-28 March.

In the lead up to the festival, Sobia has has worked alongside artist Christopher Sacre with Netley Primary School. Together, the artists and pupils are producing a participatory art work that the public are invited to explore and enjoy on Wednesday 25 March.

Find out more about the festival

Sobia will also be running a coffee morning for parents and carers of children with special needs and disabilities on 28 March. Below, she tells us more about herself and the event...

My name is Sobia Khan. I am an artist, educator and mother. I have two children, a five-year-old and a three-year-old. My five-year-old daughter was born with Coffin Siris Syndrome, an incredibly rare Genetic condition and was later diagnosed with ASD. Her condition manifests itself as Severe Learning Disability and she is Non-Verbal. When she was born, I knew she would probably have some form of disability. All the thoughts of how I would raise my daughter, the places I would take her, and the things we would do together had to be readjusted.

I decided pretty early on I was going to enjoy my very wanted new born baby. Fine, there may be some readjusting that will have to take place, but I felt strong. She survived the pregnancy, she survived labour and she was also growing strong.

I learnt many things that ‘may’ happen to her, though of course was never given a clear picture of who she would be as a person. So I began motherhood and I knew my love of art would be very much part of the picture. We went to every show, every museum and gallery. I grew confident that my daughter can and will go anywhere and everywhere.

It's sods law that, regardless of her disability, the apple really didn’t fall far from the tree. I believe we see the world the same way; visually stimulating, finding beauty in the details. She was drawn to text and typography as a baby, and this love has continued. It captured her imagination and gave her so much joy. Letters, numbers, patterns. I get it. She has to look at all writing she encounters, I get it. She revels in patterns and colour – I definitely get this one.

I can’t change the world, but I can readjust it for her. This is why I got involved in I Am At Tate Exchange Festival. Our children and the joy they find in this world – the joy we want to share with them – it’s all valid. Often our kids have many appointments, many forms of therapy. Everything they do becomes therapy. What about just being children?

The aim of the coffee morning I'm hosting at Tate Modern is to share joy and play with our children; enjoy art materials for the sake of enjoying them, and, if we need to, share the pain and the readjustments we have had to make as part of our journey, then we will do this too. Coffee and cake is my go to fuel. Come and join me and my kids as they run riot in a gallery that is theirs as much as any other neurotypical audience.

I'll end with a poem shared amongst Special Needs parents, 'Welcome to Holland'. We have definitely found a home in Holland and indeed it is lovely.

Welcome to Holland by Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Book your free place at the coffee morning