Link to new article: Older Autistic Adults’ Experiences, Attitudes and Support Needs
Interview with Marion Hersh and Christina Paine on being a disabled UCU activist:
What does it feel like being a disabled UCU activist and NEC member?
Christina: Being a disabled activist, and a long-term casualised worker with MS, means organising while simultaneously navigating structural precarity, trauma and high anxiety and instability. Multiple sclerosis is a fluctuating impairment operating within an ableist system. Fatigue, cognitive load, mobility limitations, and trauma responses are intensified by insecure contracts, constant restructures, and repeated threats of redundancy. That intersection — disability plus casualisation plus institutional instability— creates chronic stress.
Marion: I had thought I was unelectable, too weird, too different aka too disabled, too autistic to be elected. Then I realised that members were more sensible than that. It was also an amazing high, both getting elected and realising that members were able to value me as a candidate and not get put off by what I now realise is disability stereotypes. Then, of course, there was the feeling of responsibility and hoping I would be able to deliver for members.
Christina: At a university shaped by continual cuts, the labour of “fighting” is layered. It involves fighting for job security and fighting for reasonable adjustments that should be automatic. Each of these is hard work on its own. On top of that there is fighting the narrative that disabled staff are less resilient. However, the truth is that we are structurally disadvantaged and often also have to fighting trauma caused by cycles of casualisation, threat and uncertainty.
Marion: A few years after getting onto NEC, I got elected as a USS pension scheme negotiator. For a while I was worried that I would not be able to represent members’ interests as well as a non-disabled negotiator and that I would make mistakes. Then people started telling me that they valued my insights and that I often saw things that they missed. I also realised that we work as a team with all of us having strengths (and weaknesses) and contributing slightly different things.
Christina: But it is also powerful. Being on the NEC as a disabled member means I can translate lived experience into policy. It means challenging performative commitments to equity with concrete questions: helping members with reasonable adjustments, challenging the cuts to PIP and fighting for hidden redundancies and disabilities to be counted. It is exhausting. It is necessary. And it is collective work.
Marion: It has taken a while, but I think I have got beyond the self-oppression and expectation of discrimination to just focus on how I can do my best for members, while recognising that I experience additional barriers.
How did you get involved in UCU?
Christina: I got involved because precarity leaves you with a choice: isolation or collectivisation. I was sitting on my bed in a hospital and I thought I can fight this and that I wanted to stand up for truth and justice. So I started doing just that.
Marion: I was involved in several campaigning organisations when I was a student and then a contract research and later a lecturer – anti-war, anti-racist, anti-apartheid, Namibian solidarity, a women’s centre and various women’s phone lines, amongst others. This was well before I was aware of being non-binary. The political involvement was great. However, I experienced a number of problems and some very unpleasant and painful situations, which I now realise were due to
(unintentional) disability discrimination, including by organisations with disability policies. In one case I also experienced some antisemitism.
Christina: As a long-term casualised worker, I saw rolling fixed-term contracts, workloads that ignored fluctuating health and ‘flexibility’ to benefit employers and cause problems for workers. Employers lie about structural precarity. My life as a disabled person is precarious enough without the precarity associated with ‘flexible’ work. They have all this rhetoric about social justice alongside cuts and support for
removals. That is not social justice. We need real social justice which values all workers, not meaningless rhetoric. When you are disabled in that context, you understand quickly that individual negotiation is insufficient. The law — particularly the Equality Act 2010 — provides rights to reasonable adjustments, but rights without enforcement are fragile.
Marion: This campaigning involvement naturally led to joining a union as a way of achieving positive change. I initially joined one of the other staff unions rather than what was then AUT, as I wanted to be part of a more representative and less ‘elitist’ union than AUT, though not sure how fair this perception was. However, when I got a ‘permanent’ lecturing job I joined AUT. After I had been a member for a while I got
an invitation to join the UCU delegation to the TUC Women’s Committee. I enjoyed the conference, but found the social interaction difficult. It was probably at an LGBT+ event that I got upset when looking into the venue for an inter-union social activity and realising I could not even enter it. I became a member of the Glasgow
Committee and for a while organised a women’s group in the branch. I got union support when my probation was extended for a year from three to four years, as it happens by a disabled rep. I now realise that this situation was probably largely due to (indirect) discrimination, including lack of clear communication and negative perceptions of a disabled member of staff. However, for some reason I did not involve the union in an incident of antisemitic discrimination at the end of my first year as a lecturer.
Christina: I joined UCU not just for representation, but to reshape the structures that were producing harm. Activism became survival strategy. NEC involvement followed from branch work — bargaining, disputes, equality motions, pushing disability from the margins to the centre of industrial strategy. I fought my own disability discrimination tribunal and ended up with a full time permanent job. I used the law
and my own determination.
Marion: I think it is natural for me to want to become actively involved in any organisation I am part of and to shape its policies and practices. Since my initial campaigning involvement, I have also become much more aware of the discrimination and disadvantage I experience (as well as being privileged in other ways) and that I can campaign and take action for myself as well as others. I got elected to the NEC at the first UCU NEC elections through my involvement in UCU Left which I joined as it seemed to largely align with my politics and values.
What are the benefits of having more disabled members involved?
Marion: ‘Nothing about us without us.’ This slogan of the disability movement is as true for trade unions as other organisations.
Christina: There are strategic, ethical, and organisational benefits. In strategic terms disabled members understand how disability policy operates in practice. We are able to identify unintended consequences early. We can interrogate workload models, absence triggers, capability procedures, and redundancy criteria through an equality lens. There are generally negative consequences, intended or not, and risks for disabled workers. Marion: It is only disabled members who fully understand our needs, particularly when different groups of disabled members have different needs. Even organisations which try to be disability friendly are likely to get it wrong unless disabled members are involved in decision making on policy and practice. Having disabled members involved and good policy and practice on accessibility, reasonable adjustments and disability inclusion put UCU in a much stronger position to put pressure on employers to meet and go beyond their legal obligations in these areas. This is much more difficult for a trade union which is not very accessible and is directly or indirectly discriminating. As well as wins on accessibility and reasonable adjustments being good for disabled workers, they strengthen the union as a whole and help it achieve wins in other areas.
Christina: Disabled activists tend to be highly literate in equality law because we have had to be. That strengthens our bargaining positions and reduces our exposure to risk. You cannot run successful anti-casualisation campaigns without understanding the impact on disabled members. Casualisation disproportionately affects disabled staff because insecurity exacerbates health conditions and undermines adjustments.
Marion: Changes introduced for disabled members can benefit all members. For instance, in the past disabled workers have been excluded from some laboratories on the grounds of health and safety. Improving lab health and safety for disabled workers will also make labs safer and better working environments for everyone.
Christina: When disabled members lead, the union’s culture changes. Meetings become more accessible, timeframes become realistic and emotional labour is recognised. Unions are supposed to make workplaces more humane and get rid of unreasonable demands and deadlines. However, they often put unrealistic demands and deadlines on activists.
Marion: This also helps to combat the associated stigma and shame of disability. It may make it easier for other members to disclose and obtain the reasonable adjustments they need. Non-disabled people do not realise this, but in many ways, disabled workers are much stronger than other workers, as we need to overcome all sorts of barriers and hurdles. However, recognising disability is also a way of challenging dominant narratives in education about being a superperson – being able to do everything without exception and without training, and being able to work without breaks 40 hours a day 10 days a week – which is of course not realistic for anyone.
Christina: Burnout is treated as structural, not individual failure. In short, disabled leadership makes the union more democratic and more effective. It also has structural benefits for the union.
Marion: Disabled leadership also contributes to union inclusion and diversity. All the research shows that diverse and inclusive organisations are more effective, more successful and more enjoyable to be involved in. Involvement of disabled members increases humanity and compassion in our unions and workplaces. We both need support and are able to support other members and contribute to more humane and just workplaces. It took me quite a while to realise that asking for support makes me strong not weak.
What are the barriers?
Christina: There are a lot of barriers. They include fatigue and energy limitation, inaccessible meeting formats (long, late, no breaks) and digital overload.
Marion: Yes, time and workloads are often a barrier. Many things take longer and require more energy due to not being designed to be accessible and take account of the needs of disabled workers. I experience barriers which mean things take longer and lead to a lot of frustration, but am fortunate in having a lot of energy. However, I
have also got used to pushing myself and forcing myself to do things, but should not have to do this. Meetings that do not start until 2pm would fit much better with my sleeping patterns, but I recognise that this would not work for many other disabled members. And meetings on a Friday would need to be earlier for me as well, particularly in the winter, as Shabbat (Jewish sabbath) starts early. I have found both UCU and USS staff very helpful in providing accessible versions of documents. However, the additional time required to put things into an accessible format and send out hard copies mean that I and other disabled workers receive meeting papers after everyone else and can find it difficult to schedule time to read them. Meetings with a lot of oral reports without written papers can be difficult to follow. Many websites are inaccessible or take a lot longer to navigate, particularly
for disabled workers who use screen readers or have graphics and colours turned off, as I do. The volume of work and varied expectations can themselves be a major barrier. I am sometimes amazed that there are any disabled members on UCU NEC.
Christina: Other barriers include financial precarity for casualised staff, fear of being labelled “difficult” or “unreliable” and trauma from grievances and adjustment battles. It is often more difficult for casualised staff to negotiate facility time and they may lose money if they attend meetings on a working day. Both the union and workplace
have informal networks that exclude those who cannot socialise extensively.
Marion: Many disabled workers, including me, experience barriers to taking part in the social aspects of union life. Social interactions after meetings or during Congress frequently take place in noisy, crowded venues or involve large groups rather than just a few people.
Christina: Structural barriers are often misdiagnosed as personal capacity issues.
Marion: I try not to feel guilty that I need reminders to do things I have said I will do or, for instance, comment on meeting papers by a particular deadline. The same is true for my need of accessible versions of documents and support in accessing inaccessible websites. I know the problem is lack of accessibility, but it is too easy to blame myself.
How can the barriers be overcome?
Marion: We have known the solutions for years, but they still have not been fully implemented.
Christina: Access needs to be built into organising as standard practice and not by request or as an optional extra. Access costs and paid time should be budgeted for. Meetings should be shorter and have structured agendas. Hybrid participation should be the default.
Marion: With some exceptions, such as Congress and the Equality Conferences, I generally find online meetings less stressful and more accessible. However, some disabled workers find in person participation more accessible. There can also be value in occasionally meeting in person from the social and networking perspective and to avoid isolation. Both online and in person participation need to be fully
accessible. I use audio only dial in to avoid barriers of sensory overstimulation in online meetings, but this means I do not have access to all the function options and, for instance, do not know when my hand is raised. In person meetings need to be close to accessible public transport, have cycle parking, accessible entrances and toilets, as well as both stairs and lifts. The Liverpool Congress venue and hotels were not very accessible, as they seemed to only have hidden stairs which sometimes required a code. Sensory issues also need to be managed through quiet venues, appropriate lighting (though different disabled members have different needs) and sufficient space. I generally need to sit away from others and to join them occasionally. Adequate ventilation is very important, particularly post-Covid, but needs to be provided silently. Social venues also need to be accessible. I attended the Congress dinner for the first time last year as there was a quiet room with only a few tables and I really enjoyed it.
Christina: We need clear task delegation rather than heroic activism.
Marion: Change requires involving as many people as possible and building a real mass movement with disabled members at the centre of it.
Christina: There should be mentoring and buddy systems for disabled reps.
Marion: I would say for all reps. We must become much more collective and supportive.
Christina: Disability justice and anti-casualisation demands need to be linked to each other and disability impact assessment embedded in every bargaining strategy.
Marion: I agree, but as part of wider equality impact assessments, which are taken seriously and not seen as tick box exercises.
Christina: Most importantly: stop treating disability as a side issue. Disability justice is core trade union work. Because when universities make cuts, it is often disabled staff, especially those on insecure contracts, who lose their jobs first. A fighting union must be disability-literate. And disabled members must not only be protected — we must be empowered to lead.
Marion: Probably the most important contributions to overcoming barriers are coordinated action by disabled members and respectful approaches from everyone else, which value the contributions of disabled people. Non-disabled members and union structures need to be willing to learn from us, disabled people, about how best to overcome barriers and make union activity and the workplace more inclusive.