Families Want Their Cookies Now

A Paper written and presented by Margaret Cooper to the International Year of the Family National Conference, ‘Australian Families: The Next Ten Years’, Adelaide Hilton International, 20-23 November 1994. Copyright 1994.

Disability is a profoundly enriching experience for me. There is a feeling of common understanding with other people with disabilities and their families. Probably this felt bond is true to any member of a subculture, or group of people who have lived through a life struggle. One cheers those who have won their goals, and grieves for those who lose their way. An ironic humour permeates much of our experience.

It is also alienating in that those without the experience of being different, can be left behind in their own struggle for self-definition. For instance my chronological peers, at this age of half a century, are often trying valiantly to reclaim the physical features of youth, spending exorbitant amounts of money chasing the mythical youth dew complexion. I wonder at the futility of their efforts. It is difficult to conjure up empathy. That hassling over one’s difference to the advertiser’s female image was an adolescent battle for me; to develop and manage a life which would add up to more than an obsession with the deviant physical self of crooked spine, paralysed limbs and surgical scars.

Disability challenges the caring function of the family more than death, as the disability of a member will be lifelong.

We professional social workers/planners/engineers/counsellors say families are important to caring for people with disabilities, but are we doing anything more than mouthing a platitude? Do we understand the difference that disability makes?

I want to look at the initial meaning of disability to families, ways that families react, and then reflect a little on professional attitudes to disability and families. Mostly my quotes will be directly from published accounts by people with disabilities or illuminating fictional accounts.

The onset of disability is always traumatic. Many people are bom with disability. Some mothers say they knew their pregnancy was troubled. Doris Lessings (1989) heroine Harriet felt “alone in her ordeal – and she had to be, she knew that, and did not blame her family for not accepting what she was slowly being forced to accept – she became silent, morose, suspicious of them all and their thoughts about her.” Hundley (1971) wrote about her pregnancy with an autistic child “I had a nagging fear that all was not well .. there was something different about this baby.”

The unexpected birth of a child with disabilities affects the initial bonding with the parents. Craig (1979) gave birth to a child with Hohler’s syndrome, or gargoylism. Craig wrote “I found myself turning away … As the days passed the initial feeling of revulsion passed too. I stopped noticing that he looked odd, or perhaps I decided the oddness was all in my imagination.”

Intimate parental relationships can be seriously affected by the birth. Kenihan (1981) wrote of the accusations parents can hurl at each other “Haw can you accept me when I have fathered/given birth to this imperfect child? You must see me as some kind of monster .. How can we experience something which was once beautiful when it resulted in something so ugly?”

Families usually look to professionals for guidance about handling the birth of a child with disability. As a social work student I gained experience on placement in a neurology and neurosurgery unit at a major children’s hospital. This was 1966. 1 was asked to see the parents of a child who was bom with very little brain. Nerida was a beautiful baby, six weeks old, with a life expectancy of months. As instructed by senior staff, I asked her parents when they were going to take Nerida home. Her two young parents were devastated. Stumbling over their words in shock they explained that the obstetrician had told them Nerida would die within six months. He had told them to forget Nerida, to tell their children and extended family members that she had been stillborn, and to place her in an institution.

People with disabilities and professional fellow travellers are opposed to institutions for very valid reasons. We tell parents to take their children home soon after birth. What happens to the families? This year a young mother was referred to me as she was ‘not coping’ with her son who had cerebral palsy and severely intellectual disability. Young Peter gave out a thin wail about 18 hours a day. The mother had two other children aged 8 and 4. Her husband had left partly because of Peter’s intense need for attention. I met Marie, the mother, 26 years old, with the eyes and knowledge of a woman twice her age. “He cries all the time he’s awake…. the children won’t go near him … he’s no fun for them …. his father won’t pick him up… he cries at 2am and I pick him up and we watch TV with the sound turned up till he stops crying. I get back to bed for a while and then he starts again … I get about four hours sleep a night.” Peter became eligible for two hours a week of an early childhood development programme but Marie had to take two buses to get to the centre. Was the help she got appropriate to family needs?

Brothers and sisters may have difficulty dealing with their feelings. Every child wants to be at the centre of parental attention. Featherstone (1980) discussed siblings of children with disabilities;“disability confers a certain advantage, a passport to special attention, recognition, and privileges. In consequence many able-bodied brothers and sisters remember a childhood tinged by jealousy and resentment.” Herriot (1980) reported on her family’s struggle to accommodate the meaning of daughter Julie’s brain tumour and neurosurgery. Her eldest daughter“told me that she resents being told by people that she should realise ‘how much Julie has gone through. “We know that and we get sick of hearing it’. She sees Julie as weighing her abilities and making best use of them, but she sees us allowing Julie to ‘get off at times unfairly.” Hosking (1992) reported on the reactions of Jo Ann’s sister to her Quadriplegia; “I chased a car .. kicking it .. I ran down the road in peak hour traffic just hitting at the driver’s closed window. I can’t even remember why I did it. I could get in a fight with anyone, any time, anywhere. I was a mess. I would wake up every morning and in the first flash of light I was relaxed and then ‘bang’ I would get a knot in my chest .. it was like a death.”

What happens in families where a normally able member becomes disabled? Roles are interrupted. As soon as the acute medical/surgical/psychiatric trauma has resolved the family is expected to take their relative home. There is a wealth of literature on discharge planning, and the economic rationalist base for that mode of thinking. I’m keeping away from that as our topic is the caring work of families. Discharge from medical/psychiatric centres usually occurs regardless of how the individual’s new physical status has affected family roles and coping mechanisms.

Families may fail to cope with disability, temporarily or permanently. Graham (1985) wrote about a moment in her life after her son became severely head injured. She couldn’t find anywhere to have her son treated. “I was alone in an empty house. There was nobody I could talk to, no place I could go. What had it all been about, the past twenty years of my life? You give and you give and you give….. and what’s at the end of it all? An empty house and a hungry cat? A daughter doing her own thing in Queensland? A mentally ill husband? A brain damaged son whom nobody would help?”

Medical staff may confront families with the need to make decisions without giving them the time and conceptual tools necessary to formulate informed instructions. Hosking (1992) wrote of the reactions of Jo Ann Dolan’s mother to a family meeting where they were told of her high level quadriplegia and poor chance of survival. The question of turning off Jo Ann’s life support system was raised and “The meeting exposed the cracks in the family’s united stand. Later the cracks would shatter, separating the family members into tiny, isolated splinters, sharp with indecision.”

Families, particularly mothers, may be blamed for their member’s problem. Anne Deveson (1991) wrote about her search for care for her son Jonathan who had developed schizophrenia and was hallucinating. One social worker said ‘I know you are a very busy woman, but try to love your son.” A psychiatrist called her a “noxious parent.”

Families may ally themselves with the experts and unwittingly work against the best interests of the person with disability, i.e. to take control of life again. Moore (1991) wrote “Late in my recovery this pervasive sense of loss was behind many outbursts of feelings at those times when I felt my life was being restrained still further. 7he decisions of doctors or the responses of family and friends which suggested I could not push forward on any frontier which I knew I could manage, produced distress.”

Originally I wanted to work out some smart categorisation of families caring for people with disabilities so that a useful formula could be worked out about meeting their needs. For instance we’ve all heard about the “professional” family that takes their disabled member from doctor to doctor, from clinic to clinic to find a cure, never accepting the permanent change in their relative. Often those families are labelled as having some kind of pathological dependence on the disability. But some of those families have forced changes in medical thinking, for example Shirley Nolan’s search for a treatment for her son Anthony lead to the establishment of bone Marrow registries in many countries.

These families are often trapped in an existential prison; living one day after another putting out massive amounts of energy to care for a person with disabilities. Maybe instead of describing and labelling such families, we could best help by attempting to understand their new experience and then asking what would help them cope.

My parents had four children and I was lucky to live at home for the first nineteen years of my life. At age four I had a severe attack of polio and became dependent on my family for assistance with most physical activities. No school would accept me so I was finally enrolled at a special school at the age of 11. As the eldest child I was expected to take a share of domestic chores, to accept some responsibility for my siblings behaviour, and any treatment I had to alleviate my disabilities, such as being positioned in splints, had to fit in with the family routine. My parents had no respite until I was accepted into Girl Guides and went camping one week each year.

Deveson gives a blackly funny account of an American conference on mental illness attended by many families. It evoked many memories in me of the multiple consultations I have attended on disability and it started in a similar vein. Deveson called the keynote speaker, a noted expert on mental health, the Black Queen.

“The Black Queen spoke ‘Many of you havefaced one of life’s most devastating tragedies, risen above it, drawn on spiritual help that can only come through walking down the same pathway. We welcome our partnership. Together we will move beyond the- pain to find new life and new beginnings. Yhe audience was restless, A short, phlegmatic woman stood up and said ‘I am tired of waiting, tired of cliches, tired of being told how good we are. I want my cookie now. Many of us are only just hanging on.’ An elegantly dressed woman called out, ‘we are living a day at a time, but a day at a time is getting shorter and shorter for some of us. We are not prepared to spend more energy studying the problems. We know them. Now we want to move forward’ Black Queen replied ‘I am empathic with your concerns. We will move forward, through our four year plan.’ A woman shouted, ‘We cannot wait four years. We don’t want a plan. What we need isjust a little more moneyfor a couple of case managers. We need it now.’ People were on their feet cheering and shouting.. Black Queen looked rattled. She raised a limp hand. ‘It is very, very, clear that a great many frustrations have occurred over a very very long time. I concur with you absolutely.”

And so on.

Reading about the power of the so-called helping professions to oppress those who are different from society’s norms gave some legitimacy to the discomfort I felt in trying to marry my life experience with my professional role. I had experienced lots of advice and direction but getting resources to offset the disabilities of myself and other people with disabilities was really hard work. When I read the works of Illich (1975), Brandon (1976), and Guggenbuhl-Craig (1979), all of which gave different models to explain the same phenomenon of power usurping by professions, I found new energy and brought in human rights theory to my practice.

Perhaps we could start to help families deal with the trauma by accepting the person with disability. Craig had given birth to a child with gargoylism: ” 7he nurses seemed genuinely enthusiastic about him so I began taking my cue ftom them.”

Non- English Speaking background (NESB) families and families from Aboriginal and Torres Strait Islander background have particular cultural and spiritual issues which need addressing. Pane (1993) studied a small population of NESB women with disabilities and reported “the women have similar experience of family relationships .. the parents seem to have difficulty in coming to terms with their daughters having a disability, both at the time of disablement and continuing still.”

Stigma felt by families may be unwittingly reinforced by apparently innocuous social cues. The negativism felt by many towards physical or mental deviance is clearly expressed in having many of the buildings in public use remain inaccessible. Many is the time I have planned to go to a movie or play or concert only to find the event is inaccessible to people in wheelchairs. Some years ago I joined fellow disability activists and we tried to block the entrance to a cinema centre which was showing the film “Coming Home” with Jon Voight as a American soldier who became paraplegic in Vietnam. Our barricade was pretty effective until people just inched between us or crawled over us not even asking why we were there. Luckily for us a group of aggressive looking punks came along and began giving out our leaflets, hissing“Yer want one of these doncha! “ The TV cameras arrived and the manager agreed to move the film to an accessible venue.

Newell (1991) developed the point often made by people with disabilities that the disability is not the tragedy, often the worst trauma is caused by society’s exclusion. Newell stated “Rather than severe disability being inherently tragic … it is the inappropriate and inadequate support services which handicap people with disabilities and serve to create a low quality of life.” Recently I was involved with a 60 year old lady who, because of polio, had been unable to walk for 30 years. Nevertheless she had had 4 healthy children and brought them up to go out and live independently. Then she had cared for her husband now affected by Alzheimer’s disease. Betty then suffered a stroke which left her paralysed down her left side. The geriatricians, physios, and occupational therapists said she was too disabled to go home to her modified home. Betty wanted to go home, her children supported her wish, but I had to place her in a nursing home until she is accepted into one of the few government subsidised programme which would pay for her to have 4 hours of personal and domestic help per day.

After attending to our attitudes we can look at what would help the family cope with a disabled member. What do they want?

Many ask for a break, a respite for a few hours, a time when someone else can do the caring. Rix’s 1989 study for the Disability Council of New South Wales gave story after story of families desperate for a break. She pointed out the differing meanings of respite care to different stakeholders. “Administrator or policy makers are likely to view respite care as a last resort mechanism for avoiding institutionalisation, or even as an incentive to parents and relatives to look after disabled members of their family at home. Service providers often see respite care as a means of avoiding the breakdown of the carer’sfamily. … Carers often see respite care as a way of giving them some relief .. or as an opportunity for the person they care for to be in an profitable alternative environment which widens experiences and fosters skills, lessening dependence on the carer. …many people with disabilities see respite care as a way of ensuring their future, by maintaining the health and emotional well being of their carer.”

Rix also reflected the difficulty families had in trying to find respite care and other services in the maze of federal, state, local government and voluntary agencies. Despite 22 years professional life and 25 years as a disability activist I am still bewildered by the tortuous search for programmes to assist my peers, my clients and their families.

Who then plugs the gaps and looks after people with disabilities in the community? Their families. Who in their families does the bulk of caring duties? The women, mothers, daughters, grandmothers, nieces, female cousins and aunts.

A survey by the Australian Bureau of Statistics (1993) estimated that 18% of the population had a disability, 1.7% of that population had a severe handicap necessitating a sometime need for assistance and 2.4% had a profound handicap and needed assistance regularly. 4.2% of Australians acted as the principal carer, females carers who lived in the same household as the person with disability totalled 64.4% while 35.6% of carers who lived with the person with disability were male. Almost three-quarters of carers who lived outside the home were female.

Despite the maintenance of the Domiciliary Nursing Care Benefit, the introduction of the Carer’s Pension, and the Handicapped Child’s Allowance, carers in families are unlikely to be paid the market value of their efforts. Rather than launch into a discussion of the feminisation of poverty, I ask you to muse on the altruism which drives carers to disregard their own finances.

Families which are unable to get support may reject the burden of disability. These families should not be reviled but assisted to cope with separation from their relative with disability. Forcing a family to accept and care for a disabled member can lead to scapegoating, neglect and abuse.

Families who are lucky enough to get assistance will need help in incorporating paid therapeutic or support work ‘strangers’ into the family constellation.

Using past experience the family might look on the disability worker as having the power to cure, or as a nuisance invading family boundaries, or as a subordinate or as an agent of depersonalisation. The professional intervenors, such as personal care workers, may come from a very disparate social system. Imagine the difficulties facing the worker coming from strongly feminist experience who may be asked to assist a woman from a Non-English Speaking Background who sees her legitimate role as supporter to her husband, subjugating her wishes to his.

Disability is not just a challenge to the individual, or the family, it is a challenge to society. Families care for each member but when the strain of extra caring for a person with disability gets too much, the family will crack. The task, for those involved in assisting families to stay together as loving and developing entities, is to understand the real experience of families with disability, and advocate like hell for resources to meet family needs. Go to it!


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