Transcript of the opening contributions to the Neurodivergent Labour education event held on 30 April 2021
Kat Downs:
Hi, good evening and welcome to this evening’s livestream from Neurodivergent Labour. My name is Kat, I am Neurodivergent Labour’s Vice Chair, and I’ll be chairing this evening.
This evening, we’re going to discuss some of the issues facing neurodivergent people as we approach the local elections. We’re really honoured today to have a number of guests with us and we have hopefully John McDonnell joining us at some point this evening, along with Nikki Hughes. We’ve also got Andrew Berry from Unison, who is going to talk about some of his experiences with working in local government. We’ve got Gethin Jones from PCS who’s going to talk about his experiences within the prison service, and we’re also really honoured to have Joan Martin – Osime Brown’s mother – here as well. Hopefully many of you know that we’ve been supporting the campaign to secure justice for Osime. It’d be really great if you could do some shout-outs to Osime in the chat and comments, and also if you could share our stream on social media so that we can also get some more support for Osime’s campaign out there as well. It would be really great if you could support the petition. [bit.ly/osime-b]
I’m going to start with introducing Andrew Berry from Unison. We’ve got a couple of questions to ask Andrew tonight. So firstly, Andrew – in your experience, are the current structures of local government getting the best out of their neurodivergent workers and are neurodivergent workers really being included in the running of local authorities?
Andrew Berry:
I would say that clearly not – just like any other sector of the workforce or of employment.
But I do think that local government – some local government anyway, because each council can have its own individual policies as well as a sort of broad, national, ‘green book’ – some councils have better disability policies and refer to hidden disabilities although not usually using the term ‘neurodiversity’. I think that’s something that needs to be developed in councils. Some councils do and local authorities do help, employ and support people with neurodiversity whether it be dyslexia or autism.
But I think very often those people get very stuck in jobs there’s no promotion, development, support and needs set around that. And often policies are very much written in a way which – it’s like sickness policy: how many days off sick have you had? – policies are written in very much a sort of disciplinary process and not so much in a support process. Often they may have good policies on, say, reasonable adjustments but the reality is most managers in those authorities don’t actually know, aren’t actually properly trained, aren’t aware.
There is a lot more that local authorities can do, especially Labour local authorities in the area of disability and neurodiversity and it’s certainly, I think, an area that hasn’t been pushed as much as it should be. Neurodivergent Labour would be a very good place to start pushing that.
Kat:
Thank you for a brilliant, detailed answer to that. So, other than what you’ve already mentioned, what can local authorities do to encourage better representation of neurodivergent people within the actual workplace?
Andrew:
We’re dealing with local government, so we’re dealing with elected councillors, and I think it’s important to use the structures of not only the unions but also the Labour Party to make sure councils take on better policies and implement those policies.
A lot of things that have been around recently are like charters or manifestos You’ve got the national manifesto, but I think what would be really good is having some ideas, some demands placed on local authorities. Much of what’s in the [national] manifesto is ‘we want this to be legal, we want this to be regulated’, but we have an option in local authority whereby we can ask that council to implement those policies now. We don’t need to wait for a government to come in and implement policies.
So you’ve got things like the public sector equality duty – we should be insisting that when they’re looking at their stats and how they’re making sure that their workforce is accessible, jobs are accessible, that people aren’t facing unnecessary disciplinary processes, sickness processes, that then you use that equality duty to find that out and try and support people.
Making sure we have access to reasonable adjustments is one. But also, having people who are dyslexic, who are autistic etc in the workplace helps develop their services for the people in the community. And the two things are symbiotic, so if we can support people to get jobs as teaching assistants and support them to keep jobs as teaching assistants, or teachers, then we’ll present not only a workplace that is supportive of neurodiversity but also a service that is welcoming to the community.
The council is a huge employer of people and it also contracts employers, so it’s a lot of privatisation. In care, you have what’s called the ‘ethical care charter’, which puts demands on the council having minimum standards by which they employ people. You obviously want to bring things back in-house, but while they’re outsourced, we can require those contracts to follow certain standards as far as disability and neurodiversity is concerned, so that we can insist that people aren’t discriminated against – or at least do our best. That also requires monitoring.
I think that there’s something that we can do as Neurodivergent Labour, but also something we can insist on doing within the Labour party. It’s a job of work to be done and perhaps – the council elections are only next week, but perhaps after the council election – that’s when we should be getting on with some ideas– minimum standards that we want from local authorities – and taking into the unions. We can use that pressure, and the pressure we have as a Labour party, and get some of these Labour councils to develop some gold-standard policies in terms of how they support people with disabilities and neurodiversity.
Kat:
100 percent behind you. We need all the support we can get from our trade unions in terms of making the workplace fully accessible to neurodivergent people. Thank you so much for those brilliant and interesting answers there, Andrew.
I’m going to go to Nikki now. First question: What are the barriers prohibiting neurodivergent people from playing active roles in local government as elected representatives?
Nikki Hughes:
The barriers are how the media of represents disability and neurodivergence. We can’t play an active role in that and become part of that because people see disabilities and especially neurodivergence as negative things. We’re not taken very seriously when we talk about issues.
In regards to the agenda, especially in local elections, disabilities are seen as an article that isn’t at the forefront. When we talk about local councils, it will be green spaces, education, housing – those are all big things that people tend to talk about, not accessibility and stability.
So I think society’s perception of disabilities and neurodivergences means that a lot of the time, our issues are not taken seriously and we’re dismissed, and so we don’t have a lot of opportunity to go into these places and be able to put our perspectives and issues forward. I think it’s easier to overlook us and dismiss us.
Kat:
Thank you for that, Nikki. So, secondly: What has to be done to make local government more representative and enable greater neurodivergent participation?
Nikki:
I feel that local representatives need to go out into the community where neurodivergent and disabled people are. There are neurodivergent and disabled people who want to be involved and are trying to access these spaces. We’re talking about even doing something like this – we’ve seen it in the last year with coronavirus: how many organisations and workplaces have all gone online? – and that is being able to have neurodivergent people be able to have accessibility to environments that they might not have been able to before.
It’s changing things like that and changing your perspective which will eventually make things accessible for neurodivergent people, who will come forward because there is an audience for it. Then we’ll be able to change and affect policy and be able to put things forward.
Kat:
That’s brilliant. Thank you Nikki. It’s really brilliant to hear that from you and you have our complete solidarity. Is there anything at all you want to add to that?
Nikki:
I think for me – I’m Romani – we’re kept out of spaces and local government and representatives as well. As part of that, I feel like being neurodivergent on top of that – we’re excluded from a lot of policies.
MPs and representatives a lot of the time use us to gain votes by being quite negative towards us and seeing us as a problem. So, as a Romani person and being autistic, I feel like the media needs to change around that viewpoint and how MPs speak about us and see us as human beings. Neurodivergent people and Romani people need to be seen as human and see our issues being brought to the forefront of policies rather than seeing us as a performative afterthought. I would like to see – especially in local elections – our representatives talking about disabled issues and accessibility, and to have representation in my local authority.
It takes people to open the doors to that community for us to be able to put our issues forward, so it takes the step of them opening the doors first and foremost.
Kat:
Brilliant, thank you for that. I think it’s really vital that we do remember there’s so much intersectionality across so many of these issues and I’m sure everyone here sends the GRT community our complete solidarity with some of the issues that you’re facing with the current bill that’s going through parliament. So thank you so much for that.
I’m now going to John McDonnell. Welcome John. The first question for you is: You’ve been a key supporter of Neurodivergent Labour since its inception – what was it that made you believe in the goals of ND Labour and champion our organisation in the way that you have?
John McDonnell:
Over a long period of time, I found the scale of discrimination against neurodivergent people actually has been brutal, and I’ve worked with individuals and people within my community and local groups, families and others, and there’s been so many examples in which people’s lives have been, I think, rendered at times almost unliveable as a result of the failure to even recognise neurodiversity.
In many areas, but for the sort of really courageous and dedicated work of individuals and groups within our society, the state nationally and locally had no recognition or engagement with the issue or developing of policies. It often starts with an individual person you meet, and I have done as a local councillor, then as an MP, just meeting people who are really struggling.
In the old days, there used to be the ‘statement’ and now it’s the ‘plan’ – parents trying to get their child assessed to see what additional support they needed at school, and it was like beating your head against a brick wall at times.
I got motivated by anger more than anything else, and eventually it was about: I need to understand more about this, we all do, because it was becoming so frustrating. Then I met people like Janine Booth, and people know Janine and once you’ve met her you never escape! She basically pinned me down and said we’ve got to do something about this nationally within the Labour party, so we set up a group that worked up the neurodiversity manifesto. I can’t thank Janine enough for that, and all those people involved. It was just so inspirational really.
The frustration I have now is that we haven’t come anywhere near where I wanted us to be. Just listening to Nikki, which I agree was incredibly insightful, there is so much further we need to be now.
We’ve got these local elections – this is the opportunity to put the issue squarely on the agenda. When candidates are coming round, or canvassers are coming around, or when you’re getting phone calls to see which way you’re voting, or when you get the leaflet through the door, my view is what we should be saying to people now is: are you willing to sit down with us if you get elected? Are you willing to sit down with us locally and develop a local manifesto? And then go through all the different aspects of that, engaging with the community, engaging with us to see what is needed on the ground, what is needed locally.
Because we’ve had 11 years of austerity, we know what’s happened in many areas: the services have just been wiped out or so overstretched people can’t get to them. And they’re not adequate, and they were poor enough in the first instance. Austerity is still rolling on: there’s another 15 billion pounds worth of cuts coming in public services. So what we’ve got to do then is say: ok, we understand if there are financial pressures on your local authority, but help us campaign locally and nationally for a change of policy to get the investment.
So I think that’s where we’re at: we need local neurodiversity manifestos, we need local plans developed, but that’s got to be done by local councillors and others listening to us, developing it as a result of a detailed process of engagement and in that way, I think we can move this forward.
I’m quite optimistic because I think people are pretty determined now. If you think about it, it was only four or five years ago people didn’t even understand what the term ‘neurodiversity’ was – we were having to explain it to them. There was no way in which anyone thought we’d ever construct a manifesto at the national level and it was brilliant – what a huge breakthrough! So I’m optimistic we can do it, but it requires the sort of determination that we’ve seen from so many people up until now.
And we’ve got to stand firm as well. Nikki’s point about the GRT – the Gypsy, Roma and Traveller community – it’s a good example of the intersectionality that we’ve got to address so often in within our society, so there’s a completeness about our approach. It is about empowerment as well, to be honest: we’ve got to seize the power to enable us to develop the ideas and the policies that we need, and one way of doing that is to ensure that we get proper neurodivergent representation either by political office – elected as councillors and MPs – but also by demanding structures at the local level that we can engage with, so there’s proper engagement, consultation and the development of policies at the very local level.
Anyway, that’s how I got involved and that’s how really I think I want to see the way forward.
Kat:
Brilliant, thank you John.
Secondly – obviously these local elections are a really pivotal moment for the Labour Party. What makes UK Labour the party of choice for neurodivergent people wanting change?
John:
I think because we had that huge breakthrough with getting the national manifesto drafted, and after that what Janine and others did is they were trying to engage with every member of the shadow front bench to say what are you going to do about implementing it? We didn’t go as far as we could have done, I think, and we’ve got to go further, but there’s still that level, there’s still a level of engagement.
I think it’s such a huge breakthrough to get Labour to adopt that national manifesto. Now what we’ve got to do is make sure that’s sustained but developed on – actually improved as well. For me, to have a national party like that actually wake up to the issue is a huge breakthrough. So that’s why – and I think in talking to Labour councillors and Labour candidates so far, I’m beginning to realise that actually we have a significant breakthrough in raising awareness on this issue. There is an increasing understanding that they have a responsibility here, and actually it’s quite core to what they should be doing once they get elected.
I’m quite optimistic about all of that, but we still have to be determined, no matter whether it’s a Labour council or a Tory council, we still have to be absolutely determined, but I just think now, thanks to the work of people on the ground, we’ve had this huge breakthrough in the Labour party and I haven’t seen it elsewhere, so for me, it’s the party that will deliver.
Kat:
Brilliant, thank you John, and thank you for everything you’ve done for us so far at Neurodivergent Labour.
I’m now going to go across to Gethin, who is from PCS, and he is going to talk to us a little bit about his experience in the prison service, so firstly, Gethin, you obviously have many years’ experience working in the prison service: what do you think could be done to improve outcomes for neurodivergent inmates?
Gethin Jones:
It’s not just about getting the best outcomes for prisoners. There’s a lot of work that needs to be done to get better outcomes for staff as well. Most people who work for the prison service, they don’t want to slam doors and shout at people, they want to help people and they want to support people. And when you learn about neurodivergence, it’s enriching and you get to learn more about the people around you. But what the prison service really needs is proper, bespoke training – and training that comes from people who are neurodivergent and it’s their lived experience.
Just to give you an idea, I always think of two guys I work with: one of them had really high support needs and one that had quite low support needs. And with the one guy with very high support needs, I thought: oh great, I work for this agency that’s been around for a long time, it’s part of this big government department, it’s the civil service, we’ve got all these buzzwords, I’ll just access all the training that’s available there. There was one sheet of A4 that someone in a psychology department somewhere had drawn up, and it just wasn’t adequate. I was getting people coming to me saying: how do we manage and put into place these support needs? And I was like: I don’t know how to access it myself, so I had to try and find myself training. I had to find something that would help me to help other people.
It’s really difficult, and bearing in mind we’ve been through ten years of really brutal austerity, we lost staff, our pay was cut so we weren’t competitive, we had a huge turnover of staff, and then you could see that there’s this gaping gap in training that’s just not being met by your employer. At the same time, as trade unionists we’re discovering that our managers don’t understand neurodivergence and they haven’t been trained in how to manage their staff correctly.
It’s a really long way to go, and I think it’s not just the prison service that needs a lot of work to do. I know myself individually, even when I’ve tried to access training myself, I still make lots of mistakes and I’ve still got a lot of work to do.
Kat:
Brilliant, thank you. I think he makes a really good point there and training is absolutely vital. I work in the education – I’m a teacher – and training doesn’t just need doing once, it needs to be continually updated as well. As you say, that is lacking across quite a range of areas.
So as Welsh Labour are in government in Wales, what are Welsh Labour doing differently to the UK government around the prison service and neurodivergence?
Gethin:
Welsh Labour have made lots of advancements. It’s an absolute pleasure living in a country that’s got a democratic socialist government, that’s led by a democratic socialist leader. I’ve just been campaigning in a constituency that’s traditionally split between Conservatives and LibDems and even that lot – when they don’t like Mark Drakeford, they’ll still admit he’s done an amazing job in the last year.
Welsh Labour has made lots of advancements in areas like environmental science, lots of different steps forward. But on neurodivergence, there’s still a lot of work to be done.
We have done the Additional Learning Needs Educational Tribunal Act for Wales, there’s been other pieces of legislation, but the main benefits to people who are neurodivergent in Wales are the kind of benefits that we all enjoy. We manage to protect our criminal justice system by paying for PCSOs and there’s lots of other ways that it’s been protected.
My learning that I did for my NVQ in Understanding Autism, that was the Union Learning Fund, which has been cut to the bone by the Conservative government in England. It closed down the learning centre in Nottingham, but the Welsh government is still providing that funding for people in unions to get educated and have the kind of training that we all hope to benefit from.
Kat:
Thank you for that. It’s really sad, the fact that in England the government has cut that fund, because it is a vital source of training for many union reps on a range of issues including neurodivergent issues and mental health and all sorts of areas, so it is a real loss there, and I’m really glad in Wales you’ve been able to keep that fund, because I think that fund is just absolutely vital. Certainly as a trade union rep, I would have been lost without that training that I’ve had through them. So it’s just such a shame that here in England that’s not been protected in the same way. Thank you so much for your answers.
We’re now going to go across to Joan Martin who is Osime Brown’s mother, and I’m going to ask your questions together because I know one of them is going to be quite short. And please share our request for solidarity for Osime and the petition and please sign that.
So firstly, what support was offered from your local authority for Osime’s ongoing case? And secondly, what must local authorities do better to support families with dependents with ASD and ADHD?
Joan Martin:
OK, first of all thanks for having me, and the first question will be ‘nothing really’.
I’ll start by saying what happened to Osime shows a long history of failings by the various authorities and services and how they have led to the unjust and insane threat of deportation that’s still hanging over his head. I will say bluntly that the current system is not working and needs to be turned upon its head, because throwing money into a broken and failed system will not work, will not make the service better, until the unprofessional and uncaring individuals in the system that need retraining, re-educating, policing and holding accountable are replaced. This is the only way we will see meaningful change within the system.
If the people in power were paying attention, these injustices could be seen as indefensible. It is not enough to have a seat at the top table – if you understand what I’m saying – it’s about our voice being heard. We are not being believed and our concern and our lived experiences are not being looked into nor believed. You know, there’s a saying that they need to listen to us because nothing without us is for us.
Take on board what the family is telling them. They’re not doing that. Don’t instill their belief. Make sure they support and do not go in like a bull in a china shop and taking vulnerable children away from their families without good and sound reason. Do not neglect and treat like animals the very children that they are supposed to be caring for. Training and better recruitment of staff dealing with disabilities.
Also, I would say that there should be accountability, because most of us in the community who have been treated horrifically have very little confidence in the system and this needs to be addressed. All throughout Osime’s ordeal, I was there begging to be listened to but Osime never got the extra support he needed.
There is a culture within the system and that is this – that professionals know best and we just need to conform and do what we are told. Sadly, many professionals are far from professional and often definitely do not always know best.
I have spoken to many parents who are affected by this very similar and unfair treatment that my son has been subjected to, so what we are experiencing appears to be more the normal.
Some of these institutions have been deemed inadequate year in and year out, but these doors have been left open to cause more abuse, pain, neglect and injuries to families.
It is good for committees to come together to make recommendations and to enforce change, but it’s a waste of time and resources if these reports are stored on a shelf and are not acted upon. Those of us with lived experience need to be listened to and believed. This is our perpetual cry.
What is the point of creating this legislation and procedure if these people are not held accountable when they neglect their duty of care and responsibility and in so doing cause harm? I cannot understand why people who have a duty of care can lose humanity. Because, you know, humanity gives empathy and compassion. They have to use their power, influence and position to cause harm. This is what they do, and hurt me and my family and other families as well.
What is the government going to do about this situation? Throwing monies at it is not the answer. This sort of treatment is enshrined in the system. We speak out against wrongdoing, but we are fobbed off, brushed aside and given lame excuses. As parents, we have been blamed, judged, criticised and vilified by those people who purport to have a duty of care. It has been a horrendous experience for our family and still is, and every day we are living in fear and worry about what’s going to happen next.
We are still having problems with social services. We had a meeting two weeks ago. They wanted me to send them my care plan. I haven’t responded with any such care plan because I am waiting on them to assess Osime’s care needs and come up with a standard care plan based upon their assessment. Then I will give my input, depending on what they are offering him. However, at the moment, they are appearing to either be stalling or not sure how to deal with his needs. This is one of the reasons why they are failing these vulnerable children in their care. They are very slow to respond to needs.
I asked the person who came to assess Osime what service they can offer and he could not answer. He went on the computer and a couple of minutes later he was reading out what service they offered to other clients.
They are very indecisive in their approach. It is six months since Osime has been released and nothing has been put in place for him. He has no care plan for his physical, psychological or social rehabilitation. Osime has complex needs – autism, learning disabilities and other needs to be dealt with timely and sensitively. No-one wants to probe his complexities, and this is what led him in the situation in the first place – failings after failings.
Early intervention is a must to enable autistic and learning-disabled people to have a chance at life. This was not afforded to Osime, yet all the time I’ve been crying out to them for years – and still years – for help for Osime – throughout his schooling, during his time in care, Osime was not accommodated, even in prison.
Firstly, because of his autistic behaviour, he was seen as a defiant and disruptive black boy, even though he was evaluated and they strongly worded their findings and they believe he was significantly below his peers cognitively, he got disciplined if he did not understand what was being asked of him. But he never got the help he needed. Thank you.
Kat:
Thank you so much for that extremely moving speech and thank you so much for your candid words about the lived experiences. I’m sure many families can identify in many ways with what you’ve said today and I suspect many families also recognise that the early intervention that should be available to many of our neurodivergent young people is just not taking place. And I understand that within the education system.
Thank you just so much for your words there, I think that was very moving and couldn’t have said it better. I think that really got across and what the situation is you are going through right now.