Neurodiversity Celebration Week…
How can we celebrate when we have so many systemic barriers that we still need to fight against?
I’ve waited until the end of Neurodiversity Celebration week to post this because my feelings this year have been…mixed. I’ve been seeing many others in the space having a similar experience and so I’m going to try to put into words my thoughts in a longer form than a normal post.
Whilst I would love to truly celebrate Neurodiversity Celebration Week, this year it feels a little more negative than other years have, making it a little more challenging to focus on the positives. For those who have worked with me, seen my talks, read my research, or generally just follow my posts, I often try to to portray a balanced and nuanced perspective as much as possible; without devolving into purely disability medical narratives or its often more insidiously damaging narrative - “superpowers”.
However, this year, it’s been… exhausting.
I’ve been experiencing emotional whiplash at seeing the discussion take one step forward in one context, and one or two steps back in another.
In a week of neurodiversity celebration, we see so many voices joining together, organisations wanting to focus on the topic (at least for a week, which is better than not at all, even if potentially tokenistic), and more people shouting from the rooftops. Yet, in the same week, quite literally life altering/destroying issues are occurring at a wider systemic level.
On the one hand, I’m seeing some huge, positive changes. We have more people becoming interested in Neurodiversity training, in Neuroinclusivity for their individual organisations, there are more high quality books than ever before written by experts and prominent figures such as Dr Saddiq’s book I’m reading at the moment on AuDHD, the quality and quantity of information is better than ever. From a grassroots perspective, there is a lot of hope and activism. I regularly witness incredible traction in some areas, celebrating successes of organisations changing policy in the work I've been doing with them, watching more research papers with nuanced perspectives being published, and seeing more and more high(er) quality podcasts and discussions being had.
However, on the other hand, we have Peter Hitchins stating that dyslexia is ADHD’s equally fictitious brother, there are articles left, right and centre about ‘sick-fluencers’ painting those raising awareness in negative lights, and we have huge cuts to disability support and benefits inbound. So, from a systemic perspective, we’re continuing to see ever-increasing boundaries being brought up under the lie that it’s all about “helping people get into work”.
The completely tone deaf approach being used by the government with regard to PIP.
PIP assessments are already brutally difficult and inaccessible for many disabled people, with so many people being refused on first application because of some minor linguistic error or incorrect answering of questions only to have it granted on challenging the process (which is in itself stressful and distressing). The government states that it wants to incentivise people to get back into work and stop people inappropriately applying for governmental financial assistance, whilst seemingly doing absolutely nothing tangible to support neurodivergent people into work.
Cutting disability benefits to reduce fraudulent claims, when the statistics show only 1% of claimants are not eligible for the benefits just makes me beg the question: What percentage is allowable? Is the goal to get to ZERO total fraudulent or inappropriate claims? Because if so, how many legitimate and honest claims are going to be denied in the pursuit of ensuring that there are no ‘scroungers’. How many disabled people are going to be unable to access support because of the barriers put in place to stop those tiny percentages that are inappropriate?
By making the system even more difficult, who will suffer? The 1% who fraudulently claim it, or the 99% who currently rightfully receive it, and the other however many thousands eligible who do not claim it due to the inaccessibility of it?
What percentage of fraud is allowable? Can they make it impossible to ‘cheat’ the system? If so, how? And how much would that cost and AT what cost to people?
Disabled people are not the enemy here, yet the government and all of the media propaganda is desperate for us to believe so. They’re framing the disability benefit reductions as a way of stopping fraud, but in reality the people who this will affect the most are the disabled people who need this assistance, the people who are so exhausted from endlessly battling bureaucracy, who don’t have the skills or health literacy required for such lengthy, complicated processes, the people who don’t have the ability or capacity to go through the trials and tribulations, and burning hoops, to receive some small financial aid to help them simply live their lives. Just this week, the BBC posted an article of people describing the reforms as “terrifying”. PIP is not a luxury, it is a necessity for survival for many.
Fundamentally, this is going to kill people, if it hasn’t already.
The government claims they want to stop disabled people being on work-related benefits. If that were the truth, what measures are they putting in place to ensure that disabled people can access work? Are they mandating Neuroinclusivity assessments in the workplace? Are they mandating assessments in organisations on their recruitment & onboarding processes, to ensure they’re inclusive and accessible, to ensure the playing field is level? To ensure there are no unnecessary barriers for disabled people? We have already seen back-pedalling regarding flexible working, because heaven forbid anyone has a work/life balance, right?
At the same time, Access to Work feels like it’s imploding, as work-based support is being carved away for many (including myself), who rely on it to be able to stay in work. So, even for those disabled people who are able to get into the workplace, the support there is becoming seemingly more inconsistent. Or maybe that’s just me and it’s an optics thing?
They want to reduce workplace PIP benefits, but then want to seemingly promise nothing tangible to help people access work.
Approximately 30-40% of people of employment age with ADHD are unemployed. For autistic people ~70%. Many of those want to work and are more than capable of working, when basic needs are met. However, outside of the Equality Act and its fuzzy definitions of reasonable adjustments, what is being done to ensure employers become more inclusive in this changing landscape?
Maybe it’s just been a busy start to the year, maybe there are some amazing plans in the pipeline for neurodivergent workers coming up. But, I'm seeing so many people post on LinkedIn with complex feelings about ND celebration week this year that I don’t feel like I'm alone here. Although every week of the year I am celebrating (some aspects of) neurodiversity in some way, this year's ND celebration week has been a little less positive.
Nonetheless, I’ll continue to fight systemic barriers for neurodivergent people. I’ll continue to train anyone who’ll listen on how we can make society more inclusive. And I'll continue to push research that demonstrates the impact of not doing these things.
Tom