The Sunday Mail
Dr Christine Peta
Most people with disability report that when they acquire disability it is not the impairment itself that paralyses them, but the shock they experience and the attitudes of society towards them.
From that moment, their identity is altered and the disability forces them to begin to learn new ways of living and to design mechanisms that enable them to cope with the crisis of disability.
Disability triggers a spiral of a learning process which may last a life time as people try to figure out how to cope with disability.
I draw the analogy of the spiral from Boylan (1991) to illustrate what happens from the time that disability knocks on the door of a person. The spiral consists of the following eight levels.
First phase
Let us stop for a moment and get ourselves into the shoes of the affected person and imagine that moment when we are told: “You have spinal cord injury, you will never be able to walk again or that, Your child is physically well but he has a mental disability.”
Such a first phase of the spiral is characterised by a lot of uncertainty. As if we have been struck by lightning the receipt of such information can paralyse us.
The first question that comes to mind is “what really is going on.”
For example, a young lady who lives in Harare, and who lost her sight at the age of 16 said: “I was in the middle of writing my O-Level exams when my eyes stopped opening. I beat my eyes with my hands and tried to open them but I still could not see anything, it was total darkness. Imagine when I went to sleep I was seeing and now I wake up to study for the exam and I cannot see anything. It was hard for me to understand, I was intelligent but my progress on exams stopped just like that.”
Second phase
The second phase is that of certainty, it is characterised by reactions from society when signs of disability become visible and the number of medical diagnoses increases. As noted by Boylan (1991) our minds begin to tell us that this is truly happening, although deep down in our hearts we feel this cannot be happening, the threats of the truth are too frightening to embrace.
But as reality begins to dawn on us the truth begins to flow deep into our hearts. At this stage the bitter cry of “why me, of all people” is common.
A man from Ruwa, who became deaf at the age of 18 said: “People fear disability but they don’t know that I can also be afraid of myself. Instead of them fearing me, I think they should help me to cope with my own fears.
“When I became deaf at the age of 18 I started to fear a lot of things, I was worried about how I was going to cope with life, was I going to get married or not, was I going to get a job, I had a whole lot of fears.”
Phase 3
The third phase is characterised by aggression, the person who has acquired disability may hit out at anyone or at anything. The person may be arrogant to colleagues, friends and family, that is not to say that he or she dislikes them but as noted by Boylan, the real target of such aggression is his or her disability, that is the crisis.
A middle-aged man from Harare said: “I became deaf after I had just passed my A-Levels with flying colours (15 points). I had always planned to go to university to study medicine, so I applied.
“They offered me a place but when I got to the Medical School and they saw that I was deaf, they said ‘sorry you cannot be a doctor because you are deaf, you can go and try in the Accounting Department’. I was angry with the world.”
Confronted with the above situation, the afflicted person may begin to think that everything and everyone is against him. He can begin to lash out at people including those who are closest to him and they may respond by saying “is it our fault that you are deaf why are you being rough with us”.
Phase 4
The fourth phase is that of negotiation which takes place with God, fate and the world, this is when people seek for miraculous cures from religious prophets or traditional healers.
Some disabled people report over 23 medical consultations in hospitals, which usually end up in what Boylan calls “material and spiritual bankruptcy”.
Phase 5
The fifth phase is that of depression, characterised with grief which arises from that which has gone for good, such as the potential to have given birth to a non-disabled child and what the afflicted person has to wave good bye to, such as status in society, friends and colleagues.
At this stage some people may break off their learning process and continue with the cycle of aggression, negotiation or depression, a condition which according to Boylan is synonymous with social isolation.
For example, a woman who acquired physical disability at the age of 38 due to spinal cord injury said: “I lost my best friend when I started to sit in a wheelchair, that was about the time that she also gave birth to her baby. I noticed that she didn’t want me to hold her baby and she stopped coming to my house, she didn’t want to be friends with me because I am now disabled.”
The other phases
Only a few people reach stage six, which is that of acceptance.
Research indicates that only a third of people who acquire disability reach this stage. It is no longer a stage of grieving about what has gone, but it is a stage of determining that which can be done with that which is left.
The seventh phase is characterised by activity, this is where we see that in spite of disability some people can run successful businesses, start families and establish careers, etc.
The eighth phase is that of solidarity which is described by Boylan as that of “we act together, I begin to look away from myself and to assume my responsibilities as part of the social and collective ‘we’”.
Way forward
We find most people with disabilities stuck in the initial states of the spiral, unable to move to the eighth phase because society further disables them. Most people with disability depend on themselves and they are unable to get help from families and communities who begin to shun them because they are now disabled.
That is wrong, the process of learning to live with disability should proceed with support from non-disabled people. Disabled people need society and society needs them, there is a lot that people with disabilities can contribute to the development of the nation.
The example of the intelligent young man who is deaf but who intended to study medicine and to serve the nation in health care practice is a case in point.
The answer to the disability problem lies in attaining change at family, community and organisational levels, we should aim to achieve the full integration of disabled people in all facets of life.
Dr Christine Peta is a public healthcare 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 +263773699229, website www.dcfafrica.com and e-mail [email protected]
