Tue 10 Sep 2019 13.00 BST
Gazala Iqbal, who is paralysed on her right side, was so mollycoddled by her family that she was 16 before she learned to make a cup of tea. “Mum had to go into hospital. I suddenly had two siblings looking up to me but I didn’t know how to do basic things. Everyone had always done everything for me. I felt useless.”
Iqbal, now 46, was overprotected at home and her sense of dependency was reinforced by patronising attitudes from health and social care professionals. One district nurse told Bradford born and bred Iqbal that she spoke really good English “for an Asian woman”.
Such experiences drove her to do self-esteem classes and courses such as cooking. Today she is a confident, married mother of three living in an adapted property. “I’ve fought for my independence, but lots of people don’t know how to, or families don’t understand. They want to protect you, but they’re hindering you, and on top of that you get the professionals,” she says.
Iqbal’s story is echoed in new research by user-led charity Asian People’s Disability Alliance (APDA) into the barriers to independence for disabled Asian women. The report, Humare Avaaz (“our voice” in Urdu), follows 18 months of community research involving 90 women with a physical or learning disability, mental health issues, long-term condition or caring responsibility.
Ignorance of health and social care among families, APDA’s findings suggest, is compounded by professional assumptions. While the authorities are aware of the low or late uptake of services, the report states, they “appear content to presume that this is a choice made by ethnic minority communities”.
The report, funded by Disability Research on Independent Living and Learning (Drill), is particularly critical of social care for undermining disabled Asian women’s independence through funding cuts and welfare reform. Social care, particularly where outsourced, is described as “a fragmented, pressurised system that did not appear to care”.
“This report highlights the unknown and often forgotten cultural and social barriers for disabled Asian women,” says Zeenat Jeewa, APDA’s chief executive.
For Iqbal, a large barrier was that family members assumed she would always “be looked after” by her parents. Shani Dhanda, 31, who has the brittle bone condition osteogenesis imperfecta, had a similar experience. Dhanda, an events manager and disability rights campaigner, lived at home until her late 20s. She says: “There was never an expectation that I’d get married or move out. When I was learning how to drive, people who’d known me my whole life were shocked – but why wouldn’t they think I’d want to do the same things they do?”
Sanya Shah (not her real name), 69, is a wheelchair user. Until she was 44, she lived with her parents but now has help from a care agency. Shah has good support now but she says a previous carer left her in bathroom halfway through a strip wash because the 15-minute visit had ended. There are at least 1 million disabled people from black and minority ethnic backgrounds in Britain, and research shows that 25% of people with learning disabilities entering adult social care will belong to minority ethnic communities, up to 2030. Sue Bott, director of policy and research at Disability Rights UK, which manages Drill in England, says Asian women need more information so they can “find out what’s on offer to support them to be more independent, and feel safe when approaching service providers for help.” Bott also argues for more funding for the voluntary sector .
There are solutions. Bradford council is embedding a human rights approach into its social work. Over the last two years, the learning disability team has made support more accessible, encouraging engagement with the Asian community.
“People are more likely to check out what’s available in the voluntary sector first, so we need to be working in partnership with the private and voluntary sector,” says Fazeela Hafejee, Bradford’s community learning disability team manager.
A Department of Health and Social Care spokeswoman says: “It’s unacceptable for disabled people from any background not to receive the support they need to access health or care services. We expect [health] trusts to make arrangements to accommodate their needs and local authorities must assess people’s needs and provide support if needed.”
Iqbal has a solution: “The government needs to ask disabled people what they want. If a disabled Asian girl asked me for help, I’d start by asking her ‘What do you want from your life?’”
Source: https://www.theguardian.com/society/2019/sep/10/disabled-asian-women-sidelined-care-services
