Introduction
I was just listening to The Brain by David Eagleman. We humans are profoundly interdependent. We are wired for inclusion. In a YouTube video Anthropologist Michael Button reports on evidence of a left below-knee amputation that happened 31,000 years ago. The young man lived a further 6-9 years. Evidently his community not only cared enough to perform the operation but to care for, and support, him afterwards.
It seems we have always taken care of our own. There’s an account of footprints laid down 20,000 years ago found in Willandra, Australia showing a one-footed man moving with a group. Only his right footprint is visible. The group is thought to have been running, so that’s an impressive act of inclusion – and capability.
I subscribe to Disability Debrief. It’s a great site that has a global take on disability, including from places that have no government programs or policies or funding. Often, too, the community infrastructure in very unkind to people with a range of disabilities. This reality is driven home to me when I get the newsletter from YPK Bali, a service I support with a monthly donation.
It is easy to be seduced into the conceit that Disability Inclusion is mostly a ‘first world problem’. Our problems are real in context, but does our caring stop there?
The latest Debrief post concerns the struggle to survive and thrive in the current political climate. It’s a regular theme. Funding for disability support is being reduced and support is being withdrawn. But while this seems a pervasive situation there seems to be a sea change in the past 18 months which heralds a tougher position on disability.
Here’s an excerpt from Disability Debrief’s latest – Weathering the Storm:
The last year has been tough for making an independent media project on international disability rights. There are severe funding cuts on disability work, a rising backlash against diversity issues, and it’s steadily harder to get attention online.
I have signed up to be a Zoom fly-on-the-wall at an upcoming brief seminar entitled Allies and Obstacles: Parent Activism and Institutional Harm. My attention was drawn to a passage in the promotional email:
“Rather than a coherent social movement, parent activism tends to be deeply embedded within the politics of specific impairment groups, and their relationship with disabled activists varies by time, impairment, and issue. An intersectional lens adds further complexity to this picture, as families from marginalized communities confront disability systems that too often penalize and harm them and activist circles overlook their perspectives and needs.”
It’s easy to dwell in one’s own comfort zone with no broader appreciation of the wider environment. I had a conversation with a very active Disability Inclusion activist who reminded me that they are all volunteers with fulltime jobs and families. I understand that. I was in the same position. Now I have the time to explore Disability Inclusion in depth.
Below I want to reflect on what I am seeing as red flags for Disability Inclusion advocates and emergent risks. As well as being wired for inclusion we also have reflexes for exclusion. So, what is happening to trigger exclusionary responses when we are seeking inclusion? Has something gone wrong?
Disability is a complex thing.
The present political concerns seem to be reflected in a withdrawal of intellectual, moral and financial support for disability. There is a harsh reality that some activists seem to be oblivious to – support for Disability Inclusion isn’t about what side of the political spectrum one is on. It’s a right, in some countries, that places obligations on organizations and communities regardless of political perspectives.
Many corporations, which we tend to see as inherently politically conservative, have responded with strong Disability Inclusion programs. In my former role, as an employee of the NSW government, I preferred working with conservative governments on disability matters, despite my personal center-left leanings. The conservatives were more receptive to ideas. Progressives tended to think they already knew what was what, and weren’t as open to ideas that challenged what they believed.
I have been arguing for some time about the need to shift gears in the Disability Inclusion field to take a more professional approach. The political argument that was initiated back in the 1960s has been won. Now we must be involved in helping the desired changes happen. This requires skills that aren’t always present, or evident, amongst activists.
We fought to get disability on the agenda and succeeded. But now the challenge is securing the attention, commitment and funding to make desired changes in competition with other priorities. This requires political sensitivity, good negotiation and advocacy skills and a rational understanding of the underpinning mechanisms and processes. These capabilities are in scant supply among most of the Disability Inclusion advocates I know.
I am on my local government’s Access Reference Group (ARG). There is a genuine deep commitment to ensuring our community is as accessible as it can be. There are significant challenges about how doable a desired solution might be – and how it will be funded. The ARG remains outcome-focused, blended with patience. We get to see the tangible improvements to the accessibility of our public places. But we also learn that some solutions are not available because of technical, practical or financial constraints.
The ARG is a very good example of skilled collaboration. It has council staff, council members and community members and its approach is 100% professional. It is an example of what a Disability ERG could be but rarely is.
The email about the seminar noted a political bent in activism related to particular disability advocacy groups. It is very easy for people concerned about a particular disability to become laser focused on issues that concern them and have no idea of where they fit within the disability ecosystem. By that I mean that within the spectrum of disabilities the demand for support will always exceed supply. Hence competition might seem sensible, but it isn’t. This is especially the case if competition becomes political and intemperate. Eventually just saying “No!” to everyone seems the safest and fairest response.
The area that most concerns me is a fusion of identity politics and brash enthusiasm of younger inclusion advocates who seem to have decided there’s nothing to learn from what has gone before.
The trouble with this approach is that it is unsubtle, moralistic and impatient. These are the attributes of youth – as I well remember. They were never great attributes for winning support and credibility in the long run. And that’s the reason why we mostly grow out of them.
The most complex matter these days is identity politics. There has been a growing trend for people to assert identities and expect their assertions to be taken at face value. This is a far wider cultural phenomenon than disability and my concern is not to criticize the trend but to observe that Disability Inclusion is being injured by proximity to a movement that has no impact on the Disability Inclusion needs of the vast majority of people with disability and who have a need for an adjustment or an accommodation.
My argument is that as the wider movement for inclusion and identity continues to generate friction, there is a reaction against all members of the class of persons protected by anti-discrimination legislation and policy. People with disability are being swept up in a reaction against an intemperate expression of identity politics.
The reaction against ‘wokeness’ is illustrative. What was once was rational caution has become a pejorative label applied nearly all people favoring inclusion, regardless of the manner and nature of their advocacy.
Style concerns
Some people with disability who engage in political or activist action are unpleasant, intemperate and impolitic. This doesn’t make their cause less legitimate, but it can test one’s commitment to inclusivity.
A person with a disability isn’t just a neural presence of that disability. We are all complex. As are the people without disability that we engage with. There is a bunch of reasons why a desired outcome doesn’t happen and none of them may relate to intentional discrimination against a person because of their disability – or because of their manner of engagement.
The blunt force of moral excitation via political activism is more likely to not lead to no good outcomes, and to engender bias against other people with disability who are mild mannered and civil.
Activation of empathic responses isn’t triggered by overly assertive or militant behaviour.
Where are we now?
We are in an age when new political passions are being aroused. The natural thing to do is to attach them to what has gone before. So, we are seeing new Disability Inclusion passions attaching themselves to what has already been won. This is novel – and unfortunate. The raw energy of the new is adversely impinging, in ways that are injurious to, what has been settled, albeit imperfectly.
I go back to my assertion that Disability Inclusion activism and advocacy must become professional. It’s no longer fringe and optional. In many places it is law and policy. There is an important role for staff-led ERGs as sources of insight, intelligence and subject matter expertise but the business of changing organizational culture and behaviour isn’t the job of volunteers and amateurs.
What’s happening globally is a warning signal to us all. If we don’t lift our game Disability Inclusion risks being relegated to being an unwelcome irritation in organizational cultures that have enough survival challenges on their hands as it is. Organizations may be looking for an excuse to eliminate or tokenize and control DEI activism. And creating another distraction isn’t going help.
Disability Inclusion is 60 years old. But you wouldn’t know it, looking at it. In so many ways it is still immature. It really hasn’t grown up. The same can be said of other ‘protected persons’ movements. They are stuck in the activism phase as if what isn’t working now is still about moral failure and not the cultural and psychological evolution that is required for the desired and agreed upon changes to happen to the extent, and at the pace, desired.
I see that where we need to be is in a marriage between Disability Inclusion activists and organizations. It’s a relationship both parties need to work on for it to be mutually beneficial. The courtship phase was passionate and energetic, and then ‘the knot was tied’. But then, when things aren’t working out as hoped, the smart move is to get into relationship counselling. Instead, I see Disability Inclusion activists reverting to courtship mode and organizations just going through the motions of tolerance and support. Add a new energetic player from the identity politics movement and what we end up with is a confused mess.
Conclusion
Disability is complex. Lived experience comes in so many different expressions that even the idea of disability is problematic. I sense that those inclined to see disability as a critical part of their personal identity are compensating for other personal stuff they haven’t resolved. Either that or they are exploiting what they see as an opportunity to influence the Disability Inclusion movement that presently doesn’t fully understand what is happening.
I have seen a trend of Disability Inclusion activists who have achieved their needs for adjustments and accommodations moving on to focusing on career enhancement while other staff with disability, whose adjustments and accommodations needs haven’t been, met languish ignored and unsupported. This split in the Disability Inclusion movement is causing a problem because the different needs require different insights and skillsets. And if the split isn’t understood or acknowledged, Disability ERGs can seem to be ineffectual and maybe even irrelevant. Hence they can be ignored or marginalized.
What do we do about it? Continuing as we have been doing is patently courting disaster. My question to people who style themselves as Disability Inclusion advocates or practitioners is simple, “Do you care enough about the people you purport to represent to lift your game?”
I confess my bias for functional disability issues and know that I may offend some, but I do not do so intentionally. I just have a different take on the situation, based on my lived experience. I am happy to engage in respectful dialogue with those who have a different take on things. Maybe we can find common ground?