After years of depression stemming from her disability, Mary is now more assertive. But this has brought new problems
The names of the service user and her personal assistant have been changed
SITUATION: Mary Keith, 43, was paralysed from the waist down 10 years ago after sustaining a spinal cord injury in a fall from a ladder while trying to unblock the guttering on her roof. She lives in the same house which has now been fully equipped for disabled use – including an internal lift. The injury seriously depressed Mary. She became withdrawn, refused to go out and twice tried to take her own life. However, over the years she has come to terms with her disability but retains a degree of self-loathing and irritability. As such, she is thought of as “challenging” by home care staff. However, one personal assistant, Judith, from the agency has built a good relationship with her.
PROBLEM: In recent times Mary has become an activist – partly in an attempt to become more confident and raise her self-esteem. Judith has been with her on a demonstration. Mary decided she wanted to do some “guerrilla” work and, with Judith’s help, she stopped her wheelchair in front of a bus – blocking a one-way street in the town centre. However, the crowd that gathered was agitated rather than sympathetic and one person physically pushed a defiantly screaming Mary back on to the pavement amid some scuffling. Judith was shaken up by this. Unrelated to this, Judith has had a routine operation which will keep her off work for four weeks. The agency hasn’t sent another worker and Mary is getting by with help of neighbours and friends.
This case study reveals a stark tension between Mary’s choice to protest by using direct action and the paternalism of state-sanctioned care.
As a social worker, I would first wish to know much more about Mary’s situation: her views, needs, desired outcomes, reasons for protesting and especially how she is feeling would influence all further interventions.
Mary may feel powerless, depressed and withdrawn. She may feel rejected by the home care agency or resent feeling dependent upon her friends and neighbours for care and support; her needs may be neglected, her self-esteem and social networks may be at risk.
I would hope to build an open and honest relationship with Mary. I would tell her that I respect her right to protest lawfully. Social work has a long history of supporting people to challenge structural inequalities, informed by the values and principles of the radical social work movements, the social model of disability and anti-oppressive practice.
Yet Mary’s protest was not wholly lawful. Some civil rights protesters, including disability rights activists, have argued that civil disobedience has contributed to much positive change. This, however, is far outside the remit of state-sponsored social work practice.
Mary may have placed Judith and herself at risk of prosecution for “wilfully blocking the public highway”. I would discuss with Mary the possible implications of her having involved Judith in this activity, and the reasons why she cannot in future involve publicly funded personal assistants in any unlawful activities. The GSCC code of conduct reflects the tension of this situation by affirming that social care workers must promote the rights and interests of service users, stating that we must always act lawfully.
I would seek to find out why a replacement personal assistant was not provided in Judith’s absence. If Mary wishes to continue with the same agency, we may need to explore any barriers to resuming services. The agency may need reassurance that Mary will not put its staff into compromising situations, and perceptions of Mary as “challenging” should be confronted thoughtfully.
As a care manager with occupational therapy training, my focus would be to ensure that Mary’s care is provided in a way that empowers her and ensures her independence. My concern in this case is that the care agency perceives Mary to be “challenging”, which may be creating reluctance to provide another personal assistant in Judith’s absence. I would explore the reasons for this with Mary and the agency to establish whether their working relationship can continue.
Experience suggests a person can be seen as challenging when in fact they are just gaining some control over a situation. Disempowering institutional-like practice is too often prevalent with an expectation that service users will be passive recipients of care.
Mary must assume active responsibility for her own well-being as it can make a positive contribution in achieving successful outcomes. This notion is widely documented, suggesting that “doing” is integral to maximising occupational performance and well-being.
I would look to review Mary’s desired outcomes with her in light of recent events. She may find herself in a position to manage her care actively through direct payments which would give her more choice and control about the way her outcomes are achieved. This may give Mary greater opportunity to build effective relationships with her chosen personal assistants which could lead to an increase in her self-esteem and may lessen the view of her as challenging.
If direct payments are not possible, I would like to facilitate an improvement in the working relationships with the care provider and staff involved in Mary’s care. This may involve working with the provider in ensuring that staff adopt the right approach, attitude and understanding of Mary’s desire to be actively in control of her life. Staff will need to appreciate Mary’s values and respect her right to express these while recognising the boundaries of their roles and responsibilities as care providers.
It is acknowledged that Mary has the right to be an activist, but she must be aware of the implications of involving other parties in unlawful protests. This is regardless of whether they are willing participants or employed directly by her through direct payments.
Some people who acquire their disability never seem to complete the grieving process for their “able” selves, and the loss of their physical independence, writes Simon Heng. Others, quite content in themselves, are shocked and angered by the loss of what everyone else thinks are basic human rights – access to places, transport and services – or, most intimately, the right to choose who can touch you.
And this might be a helpful way of looking at Mary’s “irritability” and “challenging behaviour”. If Mary’s care has been organised by an agency, have they consulted her about which of their workers she feels most comfortable with? If you needed help with washing or going to the toilet, wouldn’t you want to choose the people who help?
It’s quite possible that Mary’s “irritability” is an expression of her embarrassment, and recurring anger, over having to share physically intimate parts of her life with strangers or with people she just doesn’t get on with. Perhaps Judith is the first -perhaps only – person the agency has sent with whom Mary feels entirely comfortable.
Mary is lucky that she has friends and relatives to help with her care, even temporarily. Many disabled people are forced to go into residential care when their home care breaks down. In the immediate future, the agency might consider negotiating with Mary about which of their workers are assigned to her. In the long run, she might consider using direct payments to employ her own personal assistant(s).
If Mary feels angry enough to take action about the injustices served on disabled people, that’s great. But if you demonstrate on your own, you run the risk of just looking deranged, rather than having an identifiable cause. If there’s a local campaign group, she might want to consider joining: if there isn’t, she might think about starting one herself.
But it’s one thing to protest yourself, and quite another to involve your PAs in something that might place them at risk, either physically or legally. Judith ran the risk of breaking her contract of employment, and perhaps being charged with aiding and abetting any crimes that Mary might have been charged with.
Mary might benefit from counselling so that she can think about how she relates to the people she needs to care for her, the way she feels about herself and the anger she feels about disability discrimination.
Simon Heng is chair of the Worcestershire Association of Service Users and writes a weekly column for Community Care