Updated: Apr 9
Access all Areas? Not for Everyone.
This piece is based on my observations locally, my professional experiences (in practice and academically) and across the social media context. I’ve been musing over this for a while. It is something that is both spoken and unspoken in differing ways. I am reflecting on the impact of poverty, access to resources and the Autistic lived experience.
Let’s Talk about Poverty
It’s alluded to in the media at the moment and in general conversation that cost of living is a topic of concern for most people for the first time in 20 years. It’s a national issue and as such is described as a crisis. It seems it is now OK to talk about it, as it affects the majority. Yet some of us have lived with poverty far beyond our own lifetimes.
Poverty is not missing out on that second holiday abroad this year. Nor is it not being able to afford a new build home. Poverty is when you have no means to acquire what you need to live on a basic day-to-day basis without being at the expense of something else. The eat vs heat situation, for example,or the lack of provision for something essential for you to function. It is an accessibility issue. It is an inclusion issue. It is a life chances issue. It is a life-defining issue and it can be a life-ending issue.
You only have a choice if you have the resources to make that choice. Physically, socially, emotionally, and yes financially.
The Social Work Role
Poverty is oppressive. Poverty is oppression. This is because poverty is determined as a social construct. It is a message to you about your worth, your value and your status in the society you live in. It does not only mean the distribution of wealth but the distribution of resources.
We do know quite a bit about the impact and spread of poverty actually. We know that it negatively affects life chances on a long-term basis (e.g. Bywaters et al 2022). We also know that different identity groups experience poverty disproportionately. For example, families with one or more disabled members experience poverty at a higher rate (31%) compared to families where disability is not an identity (19%) in the UK (Francis-Devine 2022). We also know that the intersection of marginalised identities further impacts on the risk of experiencing poverty (Bywaters et al 2022).
Our role as social workers is to be explicit about poverty, its impact and how we can support within these experiences and enable people to move out of poverty (see BASW’s Anti-Poverty Practice Guide). It needs to be part of our language with families, our assessment of need and risk, and within our planning with those we work with. It needs to move from the back of our minds to the forefront of our actions.
Poverty, Resources and Autism
I would like to focus on how unequal distribution of resources impacts Autistic people. To me, being Autistic and living autistically is experienced differently depending on what you have access to. It could be financial resources, but we also can experience social poverty where our access to social networks and support can be very, very different.
I have lost count of the number of times I have been asked if my family can help (they can’t), or if there is “someone who can support with this” (whatever “this” happens to be). This is not a reality for some of us. It just doesn’t exist. But the assumption doesn’t go away, and it has led me to be excluded from access to various things including finances, equipment, and emotional support. The “why can’t they ask family” question is a common one in social work practice too. We have a requirement to look to family first in terms of support, which is not a bad thing, but we need to just get rid of all the assumptions that tag along with it. Families sometimes just don’t exist. Sometimes they are also struggling with their own need (mine has multiple generations of disability for example). And sometimes they are the locus of abuse and harm, even if you don’t notice it.
"Just Go Private"
More and more I see the suggestion to “just go private” for assessment or support from well-meaning parents (and at times, professionals). Again, an assumption that this is an option. Then a pushback suggests that maybe you are not prioritising your children if you “don’t want to pay”.
Excuse me? Hello, parent blame! Yes, you are wrapping it up in caring language, but that is exactly what you are doing. Because you sit in a privileged position where money or other forms of resources are available to you - and, more importantly, choice - you may argue you have also had to compromise or adjust. But you are still able to spend £100s, and still be alive.
So, for those of us where choice is hampered by finance, location, or multiple need, there is no choice. We wait for the service you argue is substandard. We wait, and wait, and wait. And all that time, our access to resources gets eaten away further as our emotional resources deplete. We are left behind.
Better With Age?
My childhood opportunities were not great. I experienced abject poverty as a child. My mum was a 'professional'. She battled with knowing her children were not getting what they needed and what she could do within her means to get by. We had a maelstrom of mental health, disability, social exclusion, social expectation, bullying and in-work poverty that meant she was wading through mud to get through the day rather than ability to make larger choices around taking us out of school, giving up work, doing what’s she really wanted to do for us and for her. I am in awe of her as she fought stigma, shame, and regret (and still does). She did her best but knows it could have been better for us.
That was over 30 years ago. Where is the change?
Buying noise cancelling headphones, weighted blankets, iPad, Grammarly, AAC, mobility aides that actually fit and work for you, travel insurance, and holidays. All these are items that are not free, are not freely available but we know can make a massive difference to everyday life and self-preservation. It is not an equal experience. If you grew up in a family that protected, nurtured, and understood you; if you had financial stability; if you had access to welcoming and inclusive clubs, education, and equipment to enable you to learn you will not be experiencing Autism in this socially constructed world, the same way as those who haven’t.
This transfers into adulthood. The exhaustion of fighting and surviving to get to the other side of school. The fight to argue resources for independent living. The battle to be seen as worthy of education or being able to work in the job you want to and have lots to offer. Always pushing against the tide of stigma and discrimination. Fighting my own inner demons and internalised ableism of feeling good enough or needing to prove my worth. Wondering at times who I am doing all this for?
As I age, I find that what I have battled for (a career, a home of my own) has to be maintained but my needs are hampered by time and a battered body and mind that struggles with the pace of the everyday. But if I give up, I lose everything for me and my family. So, I have to keep going. I am stuck in being out of poverty but on a cliff edge of returning when my body gives up (and it will). I may have access to resources for now, but it is not a long-term reality.
You need resources to enter, to maintain, and to thrive in life as an Autistic person. Society accepts you more perhaps as someone useful to it. Your own self-worth is the cost. Can’t work? Need support? Can’t participate? Guess what, you are not worth the risk.
Communities, cultures, and systems are not always the safe spaces we assume when it comes to resources though. A lifetime of limited means and gatekeeping support leaves a whiff of survival of the fittest. We are so used to fighting that we don’t notice it amongst ourselves. Acknowledging those who may require more support, for example, contradicts the narrative of strength in communities who have strived for so long to challenge and overcome oppression based on those dominant discourses. Racism and ableism for example are so intertwined, that we can’t focus on one without the other. Yet we do. In social work and in the Autistic community, we are not immune. The social constructs of prejudice and discrimination exist within cultures and communities, and we must seek to dismantle them all. Intellectual and physical superiority only seeks to perpetuate the myths of race, capability, and patriarchy. We doff our caps to our masters of white supremacy who benefit from our “less than” status and perpetuate the perception of ‘more’ and ‘less deserving’ access to resources and wealth. The division seeks to perpetuate dominance and power. But not for us.
I’ve noticed especially over the last couple of years, a social media increase in voices and self-advocacy which is great. But I’ve also noticed an assumption that this is available to everyone (to do and to receive). I’ve noticed that the loudest voices are associated often with broader groups or organisations and, as such, have access to more means, space, and time than perhaps the individual who wants to be heard but is not carried forth by other louder voices. Or limited access to technical items that would make the task doable.
I love the advocates who recognise this and support each other. Who run alongside each other yet keep to their lanes. Who approach their own cultural learning with humility. My worry is that this doesn’t always happen, and we are shifting, drifting towards power pockets in our community. Marginalisation within the marginalised. It’s not even about disagreeing with the message. It’s about who has the resources to command the available space. It is the dangerous assumption of meritocracy.
I notice the development of organisations who invite you in, but with a joining fee. And I’m curious. What will I get if I join? Opportunity? Prestige? Will what I have to say or offer mean more with a subscription? I sit conflicted as I totally agree with Autistic people being paid or financially supported for their labour in education, advocating and pushing the Neurodiversity paradigm to achieve equity. However, this feels different; corporate, monetised, and, arguably, exclusive and excluding.
I guess this is my note of caution as we strengthen our voice, as we garner our pool of community resources. Remember we are not living equally. So please, carry us with you and recognise the difference. Don’t emulate oppression in the space you control. Whether you are an Autistic advocate or an ally to the community, don’t forget to check where the resources lie, and what you may need to do to enable equity. Don’t feed into the “poverty propaganda” (Shildrick, 2018, pg 23).
And social workers, this is where your profession steps up. That bus pass, that personal budget, that discussion around education, that observed minimisation of need due to stigma, that recognition of prejudice. What do they really mean to that person’s everyday and future?
Ask the question.
Name the oppression.
Challenge the discrimination.
Be the resource.
BASW and CWIP. (2019). Anti-poverty Practice Guide for Social Work. Birmingham. British Association of Social Workers https://www.basw.co.uk/system/files/resources/Anti%20Poverty%20Guide%20A42.pdf (Accessed 20th June 2021)
Bywaters, P., Skinner, G., Cooper, A., Kennedy, E. and Malik, A. (2022) The Relationship Between Poverty and Child Abuse and Neglect: New Evidence. Nuffield. Available at: https://research.hud.ac.uk/media/assets/document/hhs/RelationshipBetweenPovertyChildAbuseandNeglect_Report.pdf (Accessed: 25 April 2022)
Francis-Devine, B.(2022) Poverty in the UK: Statistics, House of Commons Library. (Online). Available at: https://researchbriefings.files.parliament.uk/documents/SN07096/SN07096.pdf (Accessed: 30th July 2022)
Shildrick, T (2018) Poverty Propaganda: exploring the myths, Bristol, Policy Press