Panel 2: "Authority and the non-recognition of racialised disability"
Flipped webinar (9/Jul/21): 'Intersectional Approaches to Disability and Race' (here)
‘If I was different, I probably wouldn’t be treated like that’: An intersectional account of the body experience of a disabled British Muslim woman
PhD student in the School of Healthcare Sciences, Cardiff University
Muslim women in the UK face multiple discriminations based on their gender as women and their religion as Muslims. The body experience of those British Muslim women who are disabled, among other identifications, has not been explored. Grounded in disability and intersectionality research, this blog post explores Nadia's experience as a disabled British Muslim woman and how she perceives her body. Using the concept of narrative intersectionality borrowed from Blackie et al. (2019), various voices within Nadia's narrative are recognised. Each voice intersects with other voices in a specific context of her life. Thus, disability is not treated as an isolated term but in relation to Nadia's gender, race, religion and the social roles of being a mother, wife and carer.
Nadia is 35 years old, Asian, Muslim, disabled, and the mother of 3 children; two of the children are also disabled. She describes having no friends or social life and experiencing a number of medical conditions, including “rheumatoid arthritis”, “Raynaud's disease”, “gastritis” and “sciatica”. At times she also experiences depressive episodes. She was diagnosed with rheumatoid arthritis three years ago. Since then, her condition has progressed quickly, causing hand deformity in which her fingers become displaced. She also experiences numbness and tingling in her lower limbs, causing loss of balance and falls. On one occasion, she reports falling down the stairs when she could not control her balance while holding her son. She struggles with the disease, which is progressing faster than she can adapt.
In the meantime, Nadia is trying to find her way around the health and social care system. Her view appears to be that there is a system, and the system should sort things out. At the same time, Nadia feels that the system, not herself, holds the power to make a decision and that various professionals control her. For example, at the rheumatology appointment, Nadia says the consultant is often "an English white lady, and I always thought like it's their way or no other way". She tries to talk about the "continuous difficulty" at every consultation, but she says the doctor does not want to hear about her pain and the impact on her life. She tells me:
They just wanna increase your medications and like send me back, and I think to myself, is it because maybe I'm a Muslim? Is it because I'm an Asian person? If I am an English White lady, I will be heard.
Nadia takes us to the space of the clinic. Here the asymmetrical relations between a racialised disabled woman and a medical practitioner exist at two levels: biomedicine, with its institutional power, and the social exclusion of racialised bodies (Selod and Embrick, 2013). From this doubly disadvantaged position, Nadia’s body provides evidence of how power is exercised. She believes that her treatment in the rheumatology clinic is a function of being “a Muslim”; maybe, “an Asian”, and contrasts the statement “if I am an English white lady”. Foucault (1979) took the lead in showing how the body in health and illness is subjected to control by deploying societal norms. Although Caiola et al. (2014) argued that no one social category takes primacy in the way gender, race and other categories intersect in a social location, the Asian Muslim identity becomes the site of oppression among other identities for Nadia, like Overstreet et al. (2020) recently suggested.
Nadia’s wants to manage her condition to look after herself and her family, but she believes that the barrier in her way is the racial disparities (see Williams and Rucker, 2000) that combines her physical pain (originating from rheumatoid arthritis) with her emotional pain, whose origins are societal. Her experience parallels the findings of Smedley et al. (2003); she believes that she is treated with a lower level of concern than White patients are treated. The discriminatory treatment has sickened her further. She says:
I take the medications that the doctors have given me; I feel like why am I still in pain? I'm hurting.
Being a disabled mother adds extra layers of complexity to Nadia’s life. She has to carry out her mothering duties while experiencing pain and the other physical limitations imposed by rheumatoid arthritis. She often injures herself while performing daily activities, such as cooking and cleaning, because of the deformity of her hand or, as mentioned, carrying her son around. Despite this complexity, Nadia does not talk about her role as a carer to the doctor “because there is a stigma” about the disabled mother’s ability to cope, manage and parent children. There is also a risk, as Nadia tells me, of the child protection system getting involved, which she fears.
Nadia’s husband is autistic, which she feels brings challenges to their relationship. She believes that “he doesn’t have the capacity to really think,” and she articulates this situation as “I’m one person fighting for my children”. Her view about autism affects her parenting and gender role. She has to take on most of the children’s care responsibilities and activities. Yet, Nadia’s eldest son is also autistic, which creates added challenges for her to meet her children’s needs while simultaneously managing her own health needs.
Nadia requests respite care for her eldest child – not to look after her own health needs or take a break from caring and everyday tasks at home, but rather to care effectively for the youngest child who suffers from anaphylactic attacks and severe asthma. Caring for three children, where two are disabled, adds to the stress levels for Nadia as a disabled mother who already has her own health needs. The eldest son has a respite package where he used to be taken away to spend some time outside the house, but the local authority decided to end this care during the Covid-19 pandemic.
The Covid-19 pandemic has exacerbated the situation and left Nadia with no support to help her children, apart from both children's medications. Certain medicines need to be given to the youngest child at a particular time to control the anaphylaxis allergy reaction. Administering these medications for long hours every day means equal support to the eldest child is out of the question. This situation has made Nadia stand up for her eldest child’s right to continuing respite care. The question is not the benefit of respite care for the child, but rather how the focus on treating autism as a deficit, which can be controlled with medications only, impedes the child's healthy development.
Nadia acknowledges the significance of social interaction in respite care for nurturing her autistic child. Thus, she has launched an appeal because the local authority’s decision to end the respite care does not address her child's social needs. In this case, a social worker is involved in assessing the child's needs and gaining a clear picture of the child's condition.
When the social worker attended to my house, I was putting the bandage for my [youngest] son, I said, please note this, it's not an easy job, and it's a two-person job, she said why don't you get your husband to do his parenting? And I shouldn't ask the local authority for this support.
Nadia tried to demonstrate to the social worker how meeting her children’s needs is not easy. As a result, the social worker put Nadia’s three children under “children in need” care, but Nadia does not understand why. However, the social worker’s decision points to things Nadia might have failed to do or been incapable of doing as a parent. But Nadia feels that this decision is unfair, and she believes that she is discriminated against because of her race.
I think because I'm an Asian Muslim, and I think she is racist because I think if I was different, I probably wouldn't be treated like that.
Nadia is worried about the future and how she will be able to cope and manage, not only in the face of chronic pain and the progression of her physical impairments but also without support for her disabled children.
I see myself struggling and getting stressed day by day. I can't take a hot bath every day because it causes me more pain, and I get a cramp, even during the summer, and I never understood why?
Nadia revealed a part of everyday life that is taken for granted until it is subject to disruption, like bathing. She cannot bathe every day due to pain, and she does not understand why this is happening to her. This situation suggests that she lacks support and appears unable to speak about her struggles and needs, because even if she speaks, she believes nobody will care to listen.