In all parts of our lives we find systems which are meant to be helpful. Support to navigate a certain aspect or point in time.

Everyone accepts that ‘the system’ is broken.  But until we listen intelligently to individuals, people with learning disabilities will continue to remain invisible.  If we value everybody, truly believe in equity and equality of opportunity, only then will people be seen, encouraged to find their voice through their inner passion. Through listening people begin to thrive, contribute, grow into their unique hitherto unexplored selves and become fulfilled citizens confidently contributing to society.

Listening must be to the person AND the people who support them. Believe them if they’re both saying the same thing. If not, make sense of the discrepancy. Communication isn’t always verbal. Listen to the body language. It’s imperative.

Speaking with Jen, who has Down’s syndrome and lives independently from us, we remembered an experience of ‘person-centred planning’. Jen said,

When I had person-centre planning at home I think the social workers, they didn’t understand who I was. They didn’t understand what I ate, they didn’t respect me for who I am. They didn’t value me at all.

Wow, that’s quite a memory that has stuck with Jen for over 20 years!

The theory was that we need to think about the individual person, and what’s important to that person. Then understand how does ‘this’ work, or how does the person do ‘that’.

I tried creating a chart with Jen in the middle, thinking, okay, so how does family work for Jen? How does education work for Jen? How does this work? How does that work? And I couldn’t do it, because for me life didn’t work like that.

It felt like nonsense.

Inclusion centred mind map created by Sue Blackwell for her family

So then I put inclusion and equity in the centre. I was putting equal opportunities at the heart of Jen’s and our lives. With inclusion in the centre, then I could put family. I could put holidays and education. I could put anything and everything of what Jen did and how she lived against it.

For me the question we should be asking is: what do we need to change in order that life is different for people who are currently excluded?

As a society we’re currently not supporting people with sufficient knowledge, sufficient experience or sufficient pay within the ‘support system’.

“My support is everything” says Jen

After trialling different systems and support for Jen to live independently, and a period of time when she returned to live with us in what I can only describe as broken by the system, we looked at new ways.

Through dance, and creating DanceSyndrome which has supported Jen and so many others in ways we could never have imagined at the start, (and even now as it continues to grow and develop!), Jen met Donna. Donna is a dance teacher and originally Jen went for ballet lessons once a week.

This led to Jen inviting Donna to become part of the growing team of dancers in DanceSyndrome and you could say, the rest is history! They talk about supporting each other. It being an equitable partnership where they have both learnt from each other as they’ve developed their relationship over the past 10 years. A system of support that works for them.

As Donna says here, “It’s finding the correct person.. that can work with you.”

Systems and support come in many shapes and forms. We have the power to change what we know isn’t working into something that truly is person centred – with inclusion and equality at the very heart of all we do.

Each of us has the ability to listen and create change. Please, let’s begin by listening.