Non-disabled people as victims of disability
A LARGE number of non-disabled people are victims of disability, their lives are deeply altered by the disability of others.
Depending on the nature of the disability of a family member, some care-givers may lose educational, employment or leisure opportunities as they dedicate time to caring for disabled family members.
Among those who may require daily assistance are both children and adults who have emotional or mental health problems, long-term physical conditions, behavioural issues, mental retardation or developmental delays or short-term physical conditions.
The kind of assistance that is required varies and may include helping the disabled person to get dressed, bath or shower, get in and out of beds and chairs, feeding him or her, get to and from the toilet, dealing with incontinence or diapers.
In some instances the care-givers may not be willing to carry out such duties, but due to family circumstances, they may be left with no choice but to assume the responsibility.
A woman who resides in Epworth said: “I have a 25-year-old brother who has Down syndrome. My father died and my mother also died. With both parents gone, I was left with no choice but to start to care for my disabled brother. I don’t really like it but what can I do? I want to go to South Africa to look for a job but I can’t do it because my disabled brother needs care and I am the only surviving sibling in our family.”
A report published by the ILO indicated that most care-givers are not trained for the task hence they may not carry out their “duties” properly.
In resonance with such an assertion, a woman from Wedza said: “I have to look after my aunt who has a mental disability. Oh! That one is a problem, I have to watch her all the time. If I look sideways she may just leave and walk away, sometimes through the bushes. So what I do is if I want to go anywhere, I just lock her up in a room then I open for her when I return. She just has to do her toilet inside that room then I deal with it when I return.”
On Monday 13 March, 2017, local media carried a story entitled “disabled child kept in fowl run”. The 13-year-old deaf girl, was from September last year kept in a fowl run by her 40-year-old father and 28-year-old stepmother in Mutorashanga. The fowl run was her lodging, which comprised of her bed which was made of grass, it was also her toilet and dining room.
There is evidence that care-giving is not free of controversy, in some instances those who are cared for argue that they do not want to be a burden to others.
For example, a lady who is physically disabled said: “I do my toilet in this tin and my daughter has to empty it for me. I feel that this is too much of a job for her. I do not want to be a burden to my children but I can’t walk to the toilet, my legs are dead.”
Research has indicated that most care-givers are women who often feel that such responsibility is either their duty or a labour of love. In addition, most communities are still organised around the notion that men are breadwinners and women depend on men, hence women have all the time in the world to take care of disabled relatives (Boylan, 1991).
In addition and compared to men, women are perceived as being more caring, hence they are better placed to care for disabled family members who may need assistance. In some instances girls are forced to drop out of school to enable them to take care of disabled family members, particularly those with severe disabilities.
However, the reality is that with “modernity” education and employment opportunities have expanded for both girls and boys, men and women, to the extent that some households are female-headed. According to Boylan (1991) a number of questions, therefore, arises: “So why do such large numbers of women continue caring for their relatives? Why don’t they give up and refuse to do it any longer?”
Some researchers have argued that if girls and women continue to carry the “burden” of care-giving, and if they are not paid for such work then unequal gender relations will continue to prevail. In addition, family relations can be deeply constrained in cases where a person is not given a choice in relation to deciding whether he or she wants to take care of the disabled person or not.
A woman from Chitungwiza said: “They said since I am the first-born child, I must take care of our disabled mother, but you see even if I am the oldest child, I still have my own life to live. I just don’t understand why we should not rotate the care-giving duty among all family members. They dump the responsibility on me and that makes me very unhappy.”
Research has indicated that women feel that in-so-far-as care-giving is concerned, they should be given a choice and not have the duty imposed on them and in the event that they decide to take up the duty, other family members should support them.
A female care giver from Mabvuku said: “I spend all the days of my life taking care of our sister who has cerebral palsy, but you see I don’t get paid for it. My brothers and sisters go to work and they earn money, but they never think of giving me any money. But I can’t work because I am taking care of the sister who has cerebral palsy.”
The above narrative indicates that where a family member is unable to work outside the home because he or she is taking care of a disabled person, employed family members could on a regular basis put together various percentages of their salaries or other resources to create a wage for the caregiver.
Way forward
We need more community care which supports the care-givers of both children and adults with disabilities. There is need for communities to organise themselves and form day-care centres, where persons with disabilities may be taken care of whilst primary care-givers go about their business.
To lock disabled people up in houses or to let them live in fowl runs is grossly inhumane. Non-disabled people should assist in the establishment of day-care centres which may also serve to prevent disability, given that a lack of appropriate support services may result in some family members becoming physically, and psychologically destroyed (Boylan, 1991).
Some grandparents devote the rest of their lives to caring for their disabled grandchildren, but they often reach a stage where due to their advanced age they are physically unfit to assist such children.
They, therefore, begin to worry about what will happen to the disabled children in the event that the grandparents die, particularly in cases where both parents of the disabled child would have passed on. Such grandparents would be happier to know that there are alternative community solutions for the care of their disabled grandchildren.
Communities should work on providing different solutions so that families of disabled persons may have the freedom to choose among a diverse range of care-giving facilities for their disabled family members. For someone who has spent the past 20 years taking care of the welfare of for example, a mentally disabled person, some community support would surely make a difference.
Caregivers of disabled persons do a lot of important work as they make an important contribution to the way society takes care of its disadvantaged members. Dr Christine Peta is a public health care practitioner who, among other qualifications, holds a PhD in Disability Studies. Be part of the international debate on how best to nurture a society which is more accessible, supportive and inclusive of disabled people. Partner with Disability Centre for Africa (DCFA) on WhatsApp 0773-699-229, website www.dcfafrica.com and e-mail; dcfafrica@ gmail.com