We all have choices in life. But sometimes society, our community or situations are created unequal. Sometimes, people are excluded, or included, because of the colour of their skin, their gender, their finances, where they were born or their disability.

How many of us would choose to be excluded from society? Would we choose to be denied access to opportunities, education, communities, support that could help us to realise our dreams and fulfil our potential?

The medics rejected our daughter Jen from birth.  They wrote her off, labelled her, steered us towards that parallel universe reserved for ‘misfits’. We were advised to ‘Put her in a home and have another child’.

Overnight we’d become a disabled family.  What a hideous way to welcome a human being into the world.

It’s incredulous that this behaviour is still happening in 2025. In Professor Sara Ryan’s recent book People with learning disabilities, erasure and social murder she says,

“People with learning disabilities do not receive the same treatment as other people.

…Social erasure is when people are not seen as people in their communities which means they lead poor lives.”

‘We are where we are, where do we go from here?’

Instead of accepting the advice so easily dished out in the hospital, we picked ourselves up from our unexpected trauma with no guide or support, feeling totally alone in this new world we had been cast into. We have continually researched, reached out, networked,  visited, engaged, discovered alternative ways to approach what seem to be insuperable challenges throughout the 44 years of Jen’s life.

Our mantra frequently gives us the strength to take that next step. Jen’s powerful mantra in more recent years has added to our support structure – Dream, Believe, Achieve.

Unbeknown to us from the day Jen was born we were embracing that great truism,

‘It takes a village to raise a child’

Exclusion or inclusion – our experience

For the majority of society who have no experience of living with learning disability, they are not aware of the parallel universe we get sidelined into through no choice of our own. Whole systems and structures have been created to support families like ours. Yet for many, us included, we feel forgotten, unseen and unheard and we seem to have to fight to change and challenge everything that doesn’t make sense for our family.

Each of us is unique, yet the system happily labels people and then assumes everyone with that label has the same needs.

Does every man or woman have the same needs? No, of course not! Labelling doesn’t address needs, it simply puts people in boxes that they then spend a lifetime breaking out of.

From our experience here is what we’ve experienced:

The truth about inclusion

The word inclusion is often banded about in such a way that it seems people are really wanting to turn things upside down and put inclusion at the heart of everything. What we often experience, as a family with one of us having a learning disability, is that people have no clue about what true inclusion means for us.

Inclusion and the broader EDI agenda feels like a checklist, a bolt on. Something that “has to be done”, not because people really want to include people like Jen in their world, but to please the boss or follow the latest trend or make good from a report that shows the organisation is lacking in that area.

When Inclusion is the starting point, everyone belongs. Equity exists when every person contributes what they can, taking what they need to be their best self and to nourish their soul. Diversity is a given when your leaders have learning disabilities.

We know it’s possible to build inclusion at the heart of families and organisations. We’ve done it as the Blackwells and in DanceSyndrome, the organisation we created together when we couldn’t find the right support for Jen to follow her desire to be a community dance leader. The results are immense for all of us, our extended families and the communities that are witnessing people with learning disabilities as role models for what’s possible.

Only when inclusion is put at the heart of everything, will social equity be achieved. There will be no further need for discussion or deliberation about inclusion.  When each of us belongs social equity will have been achieved.  When every person is respected and valued, is wanted and embraced will they be contributors to the whole and we will all be much better for it.

What will you choose? What has your experience been? We would love to hear from you in the comments or by email. The more we talk about our experiences of exclusion and inclusion the more our communities will start to understand why inclusion matters in every level of our society.