This is a revision of a recent essay I completed as part of my MSc Disability Studies, Rights and Inclusion. A big thank you to Dr Claudia Coveney for her feedback and advice throughout the writing and revision of this text.
Introduction
Disabled people make up one of the largest, yet most marginalised and oppressed communities in societies. Despite almost 1 in 5 of the global population being disabled (World Health Organization, n.d.), we continue to face social disablement in the forms of, but not limited to, physical, societal and medical barriers. With disabled people experiencing “higher rates of mental disorders and experience with violence, abuse, or trauma” than non-disabled people, all of which are known contributors to a substance use disorder (SUD) (Reif, 2023), we are at a significantly higher risk of developing SUDs (Ledingham et al., 2022).
Crenshaw’s concept of intersectionality seeks to describe the multiplicity of discrimination one can face, and challenge the concept that one can understand intersectional discrimination by understanding each layer of discrimination individually (1989). Thus, when one experiences multiple disabilities, they can experience injustices and inequalities they would not otherwise experience had they only one disability or the other.
In this assignment, I explore the experiences of disabled people who also have a SUD, and the inequalities they experience because of this dual disability. In the next section, I observe how people with SUDs and disabilities are constructed within literature, legislation and society, and argue for SUDs to be considered disabilities per the social model of disability. I also write about the use of concepts within this area, and how these help to perpetuate inequalities. I then explore the existing field of research, before showing how additional intersections of identity can alter the life experience of those with SUDs and disabilities, before setting out my hypothesis on the origins of these inequalities.
How are people with SUDs and disabilities constructed and conceptualised?
SUDs are often treated as a criminal matter, one that should be treated punitively; in the UK, illicit substance possession and use is a crime (Misuse of Drugs Act 1971) and SUDs are explicitly excluded as a disability from the Equality Act 2010[1] (Office for Disability Issues, 2011). There are quite a few issues with the criminal model of substance use. This criminalisation model of substance use goes against both the DSM-5 (American Psychiatric Association, 2013) and ICD-11 (World Health Organization, 2022), which recognise SUDs as a mental health condition, failing to acknowledge SUDs as an impairment and a disability; with this definition in mind, the moral objections of criminalising a disability should be clear and reminds one of the institutionalisation of disabled people. The criminalisation model seems to have been mostly based in a mixture of religious (Loue, 2003, p.290) and racist and xenophobic ideologies (Loue, 2003, pp.301–2; Woolley, 2021), and was never intended to help those with SUDs but “provid[e] the opportunity and alibi for decades of harassment and over policing of black communities” (Woolley, 2021), along with other marginalised groups. As the world has slowly progressed towards an approach that aims to see and treat SUDs as a medical problem, this relic of a bygone mindset has persisted, creating a strange contradiction; while many agree that SUDs should be treated in the medical sense as a mental health condition, many nations still impose jail sentences on those possessing a personal supply of illicit drugs. Since no concrete evidence has been found that jail sentences alone help treat addiction (UKDPC, 2008; Gelb et al., 2018), this approach is another way of unfairly stigmatising and ostracising disabled people, removing them from society instead of helping them to lead full lives.
In academia, for much of the twentieth-century, SUDs were almost always defined through two models; the disease and moral models of addiction[2], with the former being comparable to the individual/medical model of disability (Pickard et al., 2015). Both of these models, however, appear to forget the multifaceted factors behind the development of a SUD, such as the social, cultural and biological precursors which can be present (National Institute on Drug Abuse, 2018). Additionally, there is little literature specifically on the construction of those with SUDs along with another disability, which is perhaps, in part, due to the complex and heterogenous nature of disability and disabled people or the lack of research into people with a SUD and another disability. I will thus construct those with a SUD and another disability through the social model of disability. Here, it is important to understand how the social model of disability employs the terms ‘impairment’ and ‘disability’. Oliver (1990) described impairments as the individual symptoms related to disability (e.g. pain), whereas he described disability as the exacerbation of one’s personal impairments through disabling factors, both conscious and subconscious, and tangible and non-tangible, whereby disabled people are excluded from society or are not enabled to achieve the same quality of access to society as non-disabled people (see also Oliver and Barnes, 2012).
In existing literature, we see a social stratification—a way of arranging oneself and one’s perceived group in comparison to others and society (Bottero, 2005)—develop between disabled people with a SUD and those without. In a 2006 US survey (n=815), respondents generally viewed those with a SUD as more “blameworthy and dangerous” than those with a mental health condition, and those with a mental health condition more so than physically disabled people (Corrigan et al., 2009). Similarly, in a survey in Argentina, a woman gave money to a disabled beggar with no apparent SUD out of pity of their disability and because she knew they wouldn’t “spend the money on something else” (Ferrante and Joly, 2016, p.161). These measures of social stratification and placing one group of people above or below another, while subjective, offer an insight into the treatment of people with SUDs – they are often seen as less deserving or worthy of pity or support compared to other disabled people without SUDs. This can directly and negatively affect the level of help they receive in their treatment and recovery.
The concept of deservingness is often discussed within social sciences. Relating to disability, deservingness is usually used to divide disabled people by “membership of ethnic/racial ingroups […], blameworthiness and medical legitimation,” often to inappropriately prescribe whether they are worthy of state support (Geiger, 2021, p.337). We can see how this applies to people with SUDs; as many people consider there to be an element of choice in substance use (Pickard et al., 2015)[3], people with a SUD are seen as more to blame for their own circumstances than disabled people without a SUD. This is at odds with how disabled people are often conceptualised. We are usually seen as deserving of pity and paternalised or infantilised (Moore, 1998), being passively ‘afflicted’ by our impairments; I originally hypothesised this may have led to a better treatment of those with SUDs and another disability than those with just a SUD, since people are more likely to be sympathetic to disabled people without a SUD. Interestingly though, it has been theorised that these misconceptions lead to worse outcomes for disabled people; since many see disabled people as too responsible or uncapable of taking illicit drugs and developing a SUD, the structures—both in a physical and social sense—for treating SUDs are often unequipped and underprepared to help disabled people (Santosh and Mijovic, 2006; Ledingham et al., 2022; Reif, 2023). Thus, one of the intersectional inequalities that exists in healthcare is revealed; those with a SUD and no other disability can more easily access treatment than those with a disability (Reif, 2023), and disabled people without a SUD can more easily access general medical treatment than those with a SUD (Druss and Von Esenwein, 2006), with few options being inclusive of disabled people with a SUD. The peculiarity of this is accentuated when we remember that disabled people are more like to suffer from some of the risk factors associated with SUDs (Reif, 2023), which itself leads to a higher likelihood of SUDs in disabled people (Ledingham et al., 2022), and that disabled people are three times more likely to develop an opioid use disorder (OUD) than non-disabled people (Lauer et al., 2019). This further highlights the necessity for more inclusion and understanding of disabled people and our needs within SUD treatment.
The concept of meritocracy can also be applied to people at this intersection. It is easy to assume that those with SUDs should easily be able to recognise the problem, seek treatment and beat their disorder, which links closely with the idea of meritocracy – that anyone can succeed if they have the willpower, and that everyone has a fair and equal chance of success (Goldthorpe, 1996). However, as we have explored, inequalities exist in accessing treatment for SUDs, especially for those with another disability. Therefore, since some factors in the development of a SUD are outside of one’s control, these conceptions that one can ‘pull themselves up by their bootstraps and get on with it’ further stigmatise and ostracise disabled people. Since social isolation and stigma have been identified as a factor in the development (Hosseinbor et al., 2014), maintenance and success of treatment (Zwick et al., 2020) in those with a SUD, disabled people are in a more disadvantaged position in this pervasive loop of substance use.
Existing literature
While slowly growing, as discussed above, the existing body of research into those with a SUD and co-occurring disability remains relatively underdeveloped (Reif and Mitra, 2022). Research into ‘addictive behaviour’ didn’t start until the 1930s, at which point SUDs were still constructed as a moral shortcoming and/or a crime (National Institute on Drug Abuse, 2011). Though most research conducted nowadays recognises that SUDs are a disability, and many agree that SUDs are caused by multiple additional factors in one’s life, this still isn’t always congruent with national policies on SUDs. As public policy and dominant narratives can have an effect on research and academia (Capano et al., 2023) and a punitive approach is still favoured by many governments and a large percentage of populations (Scottish Government, 2016), it is possible that a shortage of interest in, and funding for, research into a disease and/or social model has led to a general decrease into research into SUDs as a disability. Furthermore, it was a commonly held belief that disabled people were either too sensible to try, or incapable of, sourcing and using illicit drugs that it was assumed that SUDs do not affect disabled people, or at least not to the same extent as those with a SUD and no co-occurring disability (Reif and Mitra, 2022). This lack of awareness of those with SUDs and other disabilities led to a gap in research, which had real-life impacts for disabled people; since there was a lack of research in this area, many treatment solutions failed to enact provisions for disabled people, leading to their exclusion from support (Reif and Mitra, 2022). While Reif and Mitra acknowledge that research is slowly being carried out in this field, they highlight the need for more study to address inequalities in existing programmes and improve our understanding and approaches to supporting those with SUDs and other disabilities (2022).
Additional intersections
While I have used intersectionality throughout this paper, examining the experiences of people with SUDs and co-occurring disabilities, it is essential to note other identities which exist. Intersectionality dictates that no two people can experience the same discrimination since everyone has unique identities which affect their life experience, however as researchers, we must strive to be as intersectional as possible to assess how inequalities impact individual groups and develop solutions to reduce these inequalities.
Socioeconomic status can affect how everyone interacts with society. For disabled people, this can be especially pertinent; in countries without nationalised health care, many disabled (and non-disabled) people struggle to access adequate health care (Seervai et al., 2019; The Commonwealth Fund, 2023). As a result, statistics suggest that all people with SUDs and lower incomes are more likely to have to rely on less successful programmes, such as Narcotics Anonymous or Alcoholics Anonymous, and be unable to access more effective inpatient programmes (Pace, 2016). For those who do access higher quality SUD treatment, they often have to rely on family members and insurance (Ledingham et al., 2022). For disabled people with a SUD, these issues can be further compounded. Disabled people in treatment for a SUD not only reported the same difficulties accessing affordable treatment, but also highlighted financial struggles with transportation to and from treatment facilities, stating that pre-paid private taxis or specialist transportation would be beneficial (Ledingham et al., 2022). While people with a SUD and no other disability may be able to get cheaper public transport or walk, and disabled people with a SUD but higher socioeconomic status could more easily access private transportation, these three identities—disabled, SUD and low socioeconomic status—intersect to create a barrier to treatment and recovery.
Just as socioeconomic factors can impact one’s outcomes in life, so too can other identities affect one’s life. In 2003, Beatty called for further research into the experiences of Black, disabled women with SUDs. While White women in the US were more likely to use substances than Black women at the time of writing, Black women with SUDs were more likely to face more and severer consequences, such as violence, criminal justice involvement, psychiatric and emotional problems and increased vulnerability to HIV/AIDS (Beatty, 2003). Similarly, Beatty highlights that women with disabilities are more predisposed to a SUD compared with the average population, yet besides “the association between PTSD, depression, and substance use in women including Black women,” little was known about the experiences of Black, disabled women with a SUD, hence the appeal for further research (2003). While Black, disabled women with a SUD and a co-occurring disability are of course likely to suffer some of the inequalities listed above, there are likely inequalities of which we are unaware as very little research has yet been conducted into this intersection; a recent report highlighted that “research on health and health disparities at the intersection of disability and race/ethnicity is very limited,” (Yee et al., 2019, p.69) and I was unable to find any studies into this specific intersection[4]. Quite fittingly, Crenshaw wrote that “problems of exclusion [of Black women in the discussion of inequalities] cannot be solved simply by including Black women within an already established analytical structure,” adding that “any analysis that does not take intersectionality into account cannot sufficiently address the particular manner in which Black women are subordinated,” and thus fails to identify the root of the inequalities they face (Crenshaw, 1989, p.140). In the next section, I explore some of the sources of these inequalities.
Sources of inequalities
Now that we’ve examined some of the inequalities suffered by people with SUDs and co-occurring disabilities, and the repercussions that these can have, we can explore the root causes of these inequalities and try to tackle them at the source. There are multiple frameworks available for measuring inequalities and identifying their causes, such as Oxfam’s Inequality Toolkit, which allows us to examine social norms and policy failures as national drivers of inequality (Kumar, 2019).
Prevailing social and cultural norms often see SUDs and people with a SUD in a negative light, which, I propose, can have indirect impacts on people with a SUD, as well as more direct effects. Indirectly, this widespread negative opinion prevents many politicians from taking a progressive stance on SUDs and recognising them as an impairment and disability instead of a crime (Shore, 2016). This, of course, isn’t universal (see, e.g., Scottish Government, 2022; Scottish Government, 2023), but all too often an apathetic population can dissuade progressive change and bolster and elect governments who refuse, for example, legal protections and respect for people with a SUD. This pathologisation and criminalisation of substance use, often itself spurred by negative stigma, can then lead to a continued negative stigma amongst the public (Mettler and Soss, 2004, p.62) as these narratives become more dominant and normalised, creating a negative reinforcing loop.
Stigma of all kinds can impact on people with SUDs’ treatment outcomes. In Ledingham et al.’s survey of people in treatment for an OUD and who have another disability, many patients reported stigma at all stages of their journeys, with one calling this the “hardest part about addiction” (2022, p.3). When asked about their OUD and co-occurring disability, several “described feeling like they were treated like ‘less of a person’ or ‘weak-minded’”, and many reported feeling “too much shame” to seek support (Ledingham et al., 2022, p.3). After treatment, multiple respondents spoke of doctors “letting them be in pain” instead of properly considering both their pain and disability alongside their OUD (Ledingham et al., 2022, p.3). All of these could dissuade people with a SUD and co-occurring disability from seeking treatment and maintaining sobriety.
The road to recovery is still marred with inequalities for many disabled people with SUDs. To improve equitable access to treatment and recovery for people with SUDs and another disability, we must start to remove the social disabling factors, move away from a criminalisation approach to substance use, and destigmatise SUDs. When asked what they think would help reduce stigma, respondents with SUDs and a co-occurring disability mentioned “increasing understanding that [SUD] is a disease, more openness with their stories about relapse and recovery, and more support for medication treatments” (Ledingham et al., 2022).
Conclusions
In this paper, I explored the intersection of SUD and a co-occurring disability, looking at the way they influence the inequalities suffered by disabled people, from where these inequalities originate, and how to ameliorate outcomes for disabled people. As ever, more research is required to properly understand all the inequalities at play, especially as intersections can create inequalities not present within their constituent identities, but in the meantime, I believe we should immediately abandon the criminalisation approach to substance use; adopt a model(s) which recognise(s) all factors in the development of a SUD; and work to remove the stigma and disabling barriers surrounding SUDs.
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[1] There is an exception here when the SUD is a result of prescribed medication.
[2] Much of academia hasn’t fully adopted or adjusted to the term SUD, and therefore in academia, ‘addiction’ is usually synonymous with SUD.
[3] I don’t disagree that there can be an element of choice in substance use, however it would be incorrect to ignore other contributing factors.
[4] Following a Google and Google Scholar search using the search term “(substance use disorder | drug abuse | drug addiction) AND black women AND disability”