Disability is not a dirty word.
Not all of us refer to ourselves as disabled. I do. It is an important aspect of my experience. Attempts to re-frame disability using words such as “differently abled” may add a touch of soft focus to a construct that minimises the reality of what it means to be disabled in a world designed for people who are not. It allows the majority to feel better about difference, and negate any responsibility to acknowledge, understand and change.
The social model of disability argues that disability is constructed by the environment, the social context and the social construct of who and what are considered ‘able’. A critique of this model is that it homogenises disabled people into groups without considering the individuality of the person and their needs. Equally, the social model doesn’t really account for the intersectionality of difference such as race, gender and age and how that impacts on lived experience.
However, it does offer a rationale that I align with; that I am disabled by my social context, and the social constructs that define ‘normal’, ‘expected’ and ‘wanted’ in society. So why does the word ‘disability’ incur a sense of inferiority so much so, that even within communities of the “differently abled” it can evoke negativity, dismissal or even disgust? Arguably, because we have internalised the concept that the able bodied, able minded economically valuable human is the optimal person of worth.
Bit harsh? Surely not in social work, I hear you say. Social work, that profession that prioritises anti-oppression and anti-discrimination as well as social justice as key values within practice? I’ll come back to that.
Social work loves a practice model. We shift and change in cycles of preference over the years, seeking the ultimate framework that successfully enables us to understand and support humans to navigate the chaos that is life. Favourites are encouraged by the socio-political climate of the times underpinned by favourable research. We balance risk with relationship building, we strive to understand the individual within the systems that influence outcomes and work to affect change for those who may not have the resources or social acumen to overcome their barriers to success.
Contextual safeguarding is one such model that is gaining momentum over the last couple of decades. We look to the community, the social contexts, structures outside of the individual or family that may be increasing risk of harm to young people of exploitation or abuse. Makes sense, doesn’t it? The community looks to how it can protect its folk, in its architecture, its structural design but also its attitude, investing resources and taking shared responsibility.
Now, you could argue, this also could include disabled people, But it generally doesn’t. Because we are not valued. Physical changes to town centres come via lobbying and activism - by disabled people usually. Or when something happens that affects everybody. Like a pandemic. Or, when it suits others, like consumer parents.
Autism shopping hours for example. Don’t get me wrong, the reduced noise, lighting and calmer environment is so helpful to me and my sensory thresholds, I genuinely welcome it. However, as I push my trolley around, I am acutely aware that I have one hour every week to do this (if I’m lucky). I am allowed this luxury, then my needs are ignored and I become invisible and irrelevant again whilst supermarkets pat themselves on the back for being generous and kind to the less fortunate for a tokenistic segment of their opening hours. Worse, is autism friendly cinema film showings. Almost always young children’s films, the fact that adults may prefer and tolerate the reduced assault on the senses in a picture house seems to pass people by. I don’t want to watch “Peter Rabbit” (well, not again), where’s “A Quiet Place, Ptll”?
The trauma of the everyday
Which brings me to the social work experience. Let’s start with the office environment. As we move towards more open plan or agile working (also known as losing your desk space), safe spaces become harder to find. Working with trauma daily, we tend to forgo our own self-care and a safe haven is essential regardless of neurotype. We shift and change responding to crisis and containing the pain of others, then look to our employers to contain us. But supervision alone doesn’t cut it. If you actually get it.
So, imagine if context is traumatic for you. You have had a busy and fraught day. You have done your job well; children and adults have been seen and listened to, assessments are progressing, but you are tired. Your emotional container is full and physically you haven’t eaten since goodness knows when and the elixir of life in the shape of coffee has been elusive up until now. You come back to the office. But there are no empty seats. Your team is scattered across the vast open plan landscape of infinite beige carpet, off-grey walls, and bright office chairs. For anyone where open plan offices are an everyday experience, I’m sure this sounds familiar. Now let’s add some layers.
You can’t recognise faces unless you really concentrate but that isn’t possible, as you have no energy left. This is not a recognisable safe space, and you don’t know where you can ‘fit’.
The lights are bright and physically hurt your eyes, through to the back of your skull. There are no blinds or dressings on the windows and the sunlight adds an additional glare that cannot be adjusted.
So, what might help?
Thinking systemically, I have thought, observed, and suggested several approaches to creating a universal design of a social work safe space. Let’s zoom out to zoom in.
Organisations don’t all have to undertake an Equality Impact Risk Assessment in the UK if they want to make changes in the working environment – but they should. Not as a ‘favour’ or to tick a box, but to demonstrate they value their staff, even the awkward, expensive disabled staff. Physical considerations go beyond the ramp and the disabled toilet access, it needs to include how space is managed from a sensory perspective. Do the lights need to be so bright? Can there be breaks in the open office to dull sound or offer “quiet spaces”. Do they accurately reflect the proportion of staff who will require these regularly? Do you know that data?
I for example, need to feel a fixed object (like a wall) to reconnect body and brain so sitting against or beside a wall is really important. Spatial and perception difficulties mean I may not recognise areas from another unless they are clearly defined either by colour or signs.
These examples are just mine. Others may identify other things that help them to do their job on a daily basis. So it’s important to ask the people who live this every day. And this is where it starts to get tricky. Even the most efficient organisation who complete EIA reports may not receive the most accurate information from those who need them. Because those who need them may not tell them. Because stigma is real.
So where are the disabled social workers?
You could argue that organisations and individuals cannot include and address ‘accommodations’ if they are unaware of any need. However why do I need to disclose very personal aspects of self so others can make a decision whether I am worthy enough of changing an element of the workplace so I can meet their standards? Why can’t design be universally inclusive without having to ask? Why does it have to be the marginalised to seek the solution? Romualdez et al (2021) found that concern around what others thought was a big reason for not telling colleagues you are autistic. Although just over a third of autistic adults found once they had disclosed their diagnoses in the workplace that their situation improved, they argue that responsibility shouldn’t fall solely to the autistic individual to disclose to affect change, but for organisations to embrace organisation-wide training on autism acceptance and embed pathways for disclosure to reduce stigma and discrimination. Wood and Happé (2021) find similar patterns with autistic teachers and advocate they offer positive role modelling for autistic children.
In social work, we talk about resilience, and capabilities. It’s what we measure our capacity to be a social worker. We have to meet the Professional Capabilities Framework to register as a social worker. It is an individual focus in a supposedly systemic profession. We don’t tend to explore context and how that impacts on the social worker. We tend to minimise and take a perverse sense of pride in being worn down (“they couldn’t cut it as a CP social worker” seems to be a favourite). If we aren’t seen as resilient, we aren’t good enough.
The problem with concepts such as resilience as a measuring tool or frameworks, is that term again – the “norm”. What does “professionalism” look like for example? I stim to self-regulate. I am resilient (to use that term) and part of my strategies to enable balance is to stim. But it isn’t “normal” behaviour. I have a few different stims, including twirling things (pens usually) or pulling my sleeves over my hands. I wear long sleeves as a result. I got reprimanded once for tugging at my sleeves in a meeting I was chairing. The meeting was successful. It achieved the intended outcomes, with positive feedback from others in attendance. But I was pulled up for “unprofessional” behaviour by my senior manager who was present. What did that achieve? I guess a sense of performance management power for the manager and a sense of inadequacy for me. Not exactly “resilience building”. Could I raise that with them? No, because now my parameters of what was acceptable and “professional” was skewed and trust had been eroded. I had to be and do something else to placate and please my boss. And incur anxiety and unhappiness as a result.
Increased anxiety from sensory overload and a never ending need to perform to the “norm” is exhausting and damaging. It leads to shutdown and meltdown for autistic folk. Which will affect our performance, or productivity, and your perception of our capability. My trauma with a small “t” continues as I try to fit into your expectations. You wrap it up as “resilience”; clearly, I am unable to cope with the demands of the service, and create an improvement plan with a focus on me, without considering you. And yet it is so often avoidable.
Yes ‘accommodations may take time, thinking, money (uh oh). You may need to think carefully around allocations (e.g., if I have mobility issues) but I will guarantee, my skills will outweigh my limitations in other areas. And I should be able to expect the same considerations as my colleagues.
Please leave your assumptions at the door. The Capabilities Statement for Working with Autistic Adults is a good start in recognising daily challenges and considerations for working with autistic people. Please read it. But what if the only autistic person in the room is the social worker? Or did your unconscious bias exclude me from being capable of existing as one of your peers? You may want to reflect on that one.
Disabled social workers exist. Autistic social workers exist. And we are a valuable resource to your service, your team, you. Until the association of capability is detached from assumptions of competence and locating the problem in the individual, change will not happen. Looking at disability systemically with shared responsibility to change the narrative around competence and professionalism is essential to enable us to feel fully included, and positively visible, in the social work profession.
Romualdez, A.M, Heasman, B., Walker, Z. Davies, J. and Remington, A (2021) “People Might Understand Me Better”: Diagnostic Disclosure Experiences of Autistic Individuals in the Workplace Autism in Adulthood. Vol 3 (2) 157-167.http://doi.org/10.1089/aut.2020.0063
Wood, R & Happé, F (2021) What are the views and experiences of autistic teachers? Findings from an online survey in the UK, Disability & Society, DOI: 10.1080/09687599.2021.1916888
Next time: Who are the experts?