Panel 2: "Authority and the non-recognition of racialised disability"
Flipped webinar (9/Jul/21): 'Intersectional Approaches to Disability and Race' (here)
Disability and race: Black women with Sickle Cell Disorder (SCD) experiencing bias
PhD student in Social Care, University of Derby
Sickle-Cell Disorder (SCD) mainly affects black minority and ethnic groups and is the commonest genetic condition in the UK (Aljuburi 2015). SCD gives rise to chronic pain and other health related issues (Anionwu & Atkin, 2001). SCD and its associated high unemployment levels has been both a low priority research and policy-making area (Sanger et al., 2016; Anionwu & Atkin, 2001). Maintaining employment may be and often is difficult, especially being a black woman with SCD who may be triple disadvantaged.
What the Literature Says
SCD is described as a black disease by many (Anionwu & Atkin, 2001). The condition has been stigmatised and viewed as contagious (Ibid). Persons with SCD have been considered lazy (Anie 2010). They have been labelled drug addicts seeking a fix, with the perception by some health care providers believing they have a higher level of opioid addiction (Shavers, Bakos & Sheppard, 2010; Freiermuth et al. 2014). There is the belief that black people can cope with extreme pain. This was demonstrated by Marion Sims in his discovery when he experimented on black female slaves by giving no pain medication (anaesthetic) while administering pain relief to white women when his technique was developed (Wall, 2006). This was not only ethically wrong in today's terms but racist (Wall, 2006). Yet, contradictorily, stereotypes also suggest ethnic minority patients have a lower pain tolerance (Ahmad, 2000). These negative attitudes seek to judge and stigmatize, providing prejudicial attitudes and opinions about this population (Midence & Elander, 1994; Anionwu & Atkin, 2001).
Individuals with SCD further encounter marginalization, isolation, disadvantages and discrimination (Ahmad, 2000). There is racial bias, with positive attitudes towards white people and negative towards black / people of colour (Hall et al., 2015;). Furthermore, their race affects equality of their care, with the negative attitudes affecting this disparity. (Hall et al., 2015; Nelson & Hackman, 2013). Nonetheless, disability and race continue to be a barrier for individuals with SCD with evidence of bias against them that may be found in their lived experience.
From a research study on employment and black women living with SCD, one of the questions asked is given below, and themes were developed based on the answers. Two themes are highlighted here. Theme one is lack of knowledge / understanding, and theme two is feelings / emotions.
The question asked
Did you disclose you had SCD to your employer?
How did you feel about that?
Did other people such as your colleagues know you had SCD?
What did it mean to you if they did / or did not?
Theme 1 - Lack of knowledge / understanding
There has been a lot of studies that have highlighted the lack of knowledge and understanding that individuals with SCD face from different individuals and organisations, and the women in this study experienced this first-hand (Thomas & Taylor, 2002). They all faced this problem in some form. One woman did not choose to disclose their condition to their employer initially because they did not think their employer would understand; when they did disclose, they were shocked with the response. This black woman said,
‘...I don’t think I did. I think when I was sick I did. I was quite surprised when I got the sack when I was in hospital (laughs)...I’m shocked that they did that.’
This experience identified that her employer had a negative attitude towards her disability and her ability to work. They prejudged her ability to actually work. This resulted in her losing her employment because she had a disability, and her employer had a lack of understanding about the condition.
Other women also faced many challenges, with employers rarely understanding their sickle cell and how it impacted their ability to carry out their work because sometimes they required a break and could not do the job in one go. One woman said,
‘...it is quite difficult when you explain to people, um they don’t fully understand. So, it was the case that um, I did have to remind her at times.’
However, on the other hand, one did find it welcoming whenever someone understood. They said,
‘...I felt I could open up about let's say sickle cell with my black colleagues. They understood.’
She was more likely to be understood by her black colleagues who appeared to have some knowledge of the condition. This may have been because they belonged to the same community.
One of the black women responded to the question by saying,
‘No early in my employment years I never told an employer I had sickle cell...and I think it was because um, I didn’t feel as if they would give me the job.’
Knowing her condition and having lived experiences of how it has been received did not make her feel confident in employers.
Theme 2 – Feelings / emotions
Living with a chronic illness can create emotional distress when adapting to the chronic condition and their functional ability to their environment (Midence & Elander, 1994). The stress of maintaining their employment and social life in addition to managing their pain was evident. It was noted that the women did express several emotions when telling their story. For example, one said,
‘...it was so hard. ...when I was doing the application form...’
‘...oh am I going to be at a disadvantage because I have disclosed...’
She was concerned about telling her employer about her sickle cell and the fear of being disadvantaged, as seen in the social model of disability which stresses barriers people with disabilities face in society (Thompson, 2001). She wants her employer or potential employer to recognise her disability and remove any barriers to accessing employment and make her chances equal to non-disabled people. In addition to this assurance, she wants them to remove and challenge their negative attitudes and stereotypes of disability and give her an equal chance of employment. She also expressed that
‘...there is a stigma attached…'
As a black woman with sickle cell, she is aware that the condition is viewed as a black condition, which is therefore seen as a race issue. She is not only coping with stigma, or in other words discrimination, but also the shame she feels about her condition. Furthermore, she is aware of how it relates to her being black and being treated differently and unfairly, experiencing racism, prejudice and discrimination.
Another expressed concern feeling ‘apprehensive’, ‘worried’, and feeling ‘judged’ by employers. They were concerned about the disclosure of their sickle cell, but they did disclose it to one employer. They said,
‘I said I’ve got an illness called sickle cell. ... He said... this looks like this is a psychological issue.... I felt like I was being bullied.’
Having gathered the confidence to tell her employer; this woman said,
‘... I felt humiliated. I felt ashamed of the illness that I’ve just disclosed.'
At one of the companies she worked for and was applying to change location, a manager who was interviewing her gave her some very interesting information. She said that he said,
‘Your manager gave you ... a really bad reference ... But ... I can tell that this isn’t who you are. And it was written in spite. ... I had the interview and ... I got the job, urm I got the job.’
Unfortunately, her previous manager discriminated against her by giving her a really bad job reference which would serve to jeopardise her employment chances. The manager may have given her a bad reference for a variety of reasons. However, the manager who informed her of the reference realised it was portraying an unfair picture which was not true and was likely to be discriminating because of her disability and race.
Overall, the women all found it difficult to disclose their SCD to employers. They experienced emotions of worry, apprehension and fear of losing or not getting the job, being judged, disadvantaged, sick and viewed as having a psychological problem. Most had problems with employers understanding their SCD. Some employers could be seen as biased.
The effects of these biases
The effects of these biases on the black women gave rise to social inequality. Individuals stated they were being treated differently, and one talked about the internalisation of stereotypes and prejudices leading to low self-esteem. This resulted in having a negative view of themself and a lack of motivation, etc. Ableism may give rise to misconceptions and generalisations, with disabled people likely to be considered as inferior.
But for these women, ableism intersected with racism. Intersectionality refers to multiple forms of oppression which black women have faced historically and in the present that is institutional, and interconnected with the experiences they faced due to their identity. This is argued by Crenshaw, who talks about catering for privileged white women, for example, (Crenshaw et al., 1995; Crenshaw, 1991). These intersections shape the lives of people with SCD who are likely to be black and disabled.