A Neurodiversity step change - what I learnt from historical social change-makers

A step change is needed for Neurodiversity, and this needs people to stop and think. To think about their long-held views and beliefs, to question what is right, and consider what needs to change going forward.

I have been reading about change-makers of the past and thinking about what they can teach us about getting society to embrace Neurodiversity. My hope is that I can understand from them what we need to think about going forward if we wish to see Neurodiversity inclusion be embraced on a global scale.

My curiosity about this was sparked as I watched Barack Obama being interviewed by David Letterman. Barack Obama said something that made me sit up and take notice. It was as if he was answering my questions about the plausability of achieving something the embracing of Neurodiversity, when there are so many people whose mindsets seem closed to the possibilities of inclusion in educational settings and workplaces.

Every once in a while you'll find in every period in our history .... extraordinary folks like a John Lewis, who against all odds change history
Barack Obama

What a great and inspiring thought. That there are people out there who are Neurodiversity's John Lewis. People who against all odds are destined to change history.

Civil Rights

Who was this John Lewis, and how did he change history? I had to know.

On 7 March 1965, John Lewis led a group of people on a march from Selma to Montgomery to campaign for the registration of black voters in the South. As they crossed the Edmund Pettus Bridge they walked into a blockade set up by Alabama state troopers and were brutally attacked with clubs and tear gas.

Eight days later President Johnson was motived by this event to speak before Congress, and a few months later he signed the Voting Rights Act to ensure that all citizens would be able to vote regardless of their skin colour.

As John Lewis set across that bridge, he didn't know that it would lead to a defining moment in history. He just knew that he was moving forward for something that he believed in and that he needed to raise his voice in order to be heard.

The thought that any moment could lead to widespread change should give us hope, even when facing the most difficult of situations. There will be challenges and resistance but it will be nothing like what John Lewis faced, the trick is to keep moving forward as change could just be on the other side of the horizon.

Women's Rights

With this fresh in my mind, I explored the history of women being given the right to vote 100 years ago. I quickly learnt that women campaigners largely fell into two groups, each of whom had very different views and approaches to achieving change.

The Suffragettes, like Emmeline Pankhurst, believed in "deeds not words" and often used tactics such as hunger strikes, arson and breaking windows to make their point, as they felt that the moderate approach had yielded no progress. The Suffragists, like Millicent Fawcett, believed in peaceful tactics which involved marching, petitioning, campaigning and raising money to fight for women's rights. They actively distanced themselves from the activities of the Suffragettes.

These differing views led to divisions amongst those campaigning and there was no united front. Despite this, their common passion and relentless campaigning meant that they increasingly could not be ignored.

everything points to the growing volume and force of the womens movement. Even if victory should be delayed it cannot be delayed for long
Millicent Fawcett, 1912

Despite their differences, the years of campaigning paid off when on 6 February 1918 women over the age of 30 were given the vote under the Representation of the People Act 1918. Ten years later women were granted the same voting rights as men in 1928.

I have often wished that the people with differing viewpoints about embracing Neurodiversity could come together in support of what seems to be a common goal. This was a good reminder that we don't all need to agree in order to make change happen. We don't even need to agree to disagree. Each voice counts, even if they differ, as it is our collective voices which will lead to the growing volume and force of the neurodiversity movement until the step change can no longer be ignored.

Gay rights and the diagnostic manual

As I reflected on all that I learnt, I remembered being told that being gay was once classed as a mental illness in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and I began to wonder about what led to its removal.

It came shortly after The Stonewall Riots, during a time of increasing visibility of LGBT individuals and campaigning for pro-gay rights. It started with activists who invaded meetings of the American Psychiatric Association (APA) to challenge the idea that homosexuality was a mental illness. The protests led to an invite for activists, including Frank Kameny and Barbara Gittings, to speak at the1972 & then the 1973 conventions. The tide had turned, and after Robert Spitzer (who went on to chair the DSM-III task force) met a secret group of gay psychiatrists he became convinced, despite initial reservations.

Equality means more than passing laws. The struggle is really won in the hearts and minds of the community, where it really counts
Barbara Gittings

Robert Spitzer became a lead voice in the call for change, and just a few months later the DSM was changed in December 1973. Homosexuality was no longer classed as a disorder, but it took more than 10 years for it to be fully removed from the DSM.

It was the courage of prominent people in well regarded positions, who chose to stand up and be recognised as gay along with the support of people from inside the APA that helped to achieve the desired change.

With a spectrum of needs the question of disability vs. difference is not an easy one to answer - especially not in this post. There are many people with severe learning disabilities, and many without. Each need a different level of support. What is hopefully less questionable is that we need the voices of Neurodivergent people along with the support of educators, employers and professionals to make a difference. Acceptance can be boosted by people in prominent positions acknowleding their own differences, and from people on the inside supporting the call for change.

South Africa and the end of apartheid

Thinking about all this change made me think of my own experience of a social change.

As someone who was at high school in South Africa when Mandela was released, apartheid ended and the first democratic elections were held, I know that change can be unsettling. Even when you aren't against the change.

At 14, I didn't understand what the end of apartheid meant as it wasn't something that we talked about much at home or at school. I was not racist, but I did live in a segregated society. When that is is all that you know, it is hard to know what change will be like. It was a time of uncertainty with gossip, gloomy predictions and scaremongering. I remember being worried about what the what change would mean, the possibility of civil war and the fear of losing everything that we had.

In reality, I made new friends as school became integrated and was proud of how South Africa embraced becoming a rainbow nation.

There is no passion to be found playing small - in settling for a life that is less than the one you are capable of living.
**Nelson Mandela **

My years in the UK have helped me to better understand a non-segregated way of life, and the impact that segregation had on those who were being excluded. I know that I have been influenced by my years of living in South Africa, and I am careful to avoid unconscious bias from influencing my thinking as I know that it is these unconscious biases that can prevent us from achieving full integration.

The challenges of people being uninformed or misinformed is currently one of the biggest challenges that I can see with embracing Neurodiversity, which is why there is such a great need to raise awareness and ensure that people fully understand what it means. People can struggle to understand what they don't know, and in many cases may need to see what is possible before addressing unconscious biases that prevent them from fully adopting a new viewpoint.

Looking ahead for Neurodiversity Inclusion

So what have I learnt? I have learnt that bringing about a social change is not easy, but is it not impossible.

If I were to guess what the change-makers of the past would tell me, if I were able to get them all in a room to share their top 10 tips, it would be:

1. Speak out so you can add to the volume of voices raising awareness and calling for change
2. All voices count, even if they differ
3. Highlight the challenges that others don't see, especially the impacts of discrimination
4. Find ways to inform the uninformed and misinformed, so that they can start to understand why change is needed
5. Give people insights into what life after the change could be like, as people need help to see what is possible
6. Celebrate neurodivergent people who have successfully overcome challenges to be successful in their own way
7. Enlist supportive advocates including parents / carers, politicians, professionals, educators and employers to help drive the change from the inside out
8. Be resilient in your quest for change and continue moving forward, even in the face of adversity
9. Be hopeful in your ability to bring about change, as it can take a single moment to create the tipping point
10. Never give up

This is my mission for Me.Decoded - to give voice to those that need to be heard, and enlist advocates who can help drive change from the inside out

The question now is what do we do now in order to move Neurodiversity forward? How can you help make that happen?

[This post was first published on Life and ASC]