Dr Christine Peta
Some people with disability experience horrendous incidences of abuse by personal assistance providers in both family and professional settings.
The challenge is that the boundary between help and abuse is usually not clear, yet some disabled persons are unable to carry on with their daily lives in the absence of some form of assistance.
Stories have been told of disabled persons with mobility problems, who are left in the shower for hours before a family member returns to take them out of the shower, or disabled people who are left in the toilet for more than an hour before the caregiver returns to help them to get out of the toilet.
It is unimaginable that a disabled woman can be raped by an ambulance attendant whilst being transported to a hospital.
Some service providers such as social workers violate the right of disabled persons to privacy by gossiping about confidential issues concerning their lives.
Saxton et al (2001) quoted a person with disability thus: “They start talking to each other about HIV, as if it doesn’t matter if the next person knows. If you come to take care of me, take care of me.
‘‘If I want to tell (someone) I’m HIV that’s my business, not the attendant.”
Research indicates that where persons with disability are assisted with intimate activities such as dressing or bathing, it takes just a few weeks for the professional boundary to be crossed.
The line between appropriate ways of touching and inappropriate ways of touching, which could lead to unwanted sexual contact is often very unclear.
Personal assistance providers often become very familiar with the disabled persons they support, and they may begin to feel that they are friends with them.
In a study undertaken by Saxton et al (2001) a woman with disability was quoted as saying: “How does a woman make sure that when her vulva is being cleaned, it’s not being rubbed too much or too hard.”
Personal assistance providers can also be emotionally abusive, thereby yelling and screaming at persons with disability and threatening to abandon them.
For example, a personal assistance provider may say things like, “If you do that again I will beat you up and abandon you, I will leave this place and you will never see me again.”
Personal assistance providers may also just ignore the person with disability or disregard what the person says.
“Even if I am disabled, I know what I want and what I don’t want. In any case my assistant was being paid by my father to assist me whilst my father was at work. But you see she never listened to anything I said; she would just do her own thing and ignore everything that I said because I am disabled.”
Other forms of abuse of persons with disability are of a financial nature; examples include assistants who steal money and personal belongings from a blind person.
In some cases some personal assistance providers may forge the signature of the blind person in order to rob him or her of property, or they may use the ATM card of the blind person to withdraw extra amounts of money, or when assisting the blind person with shopping, some personal assistance providers may buy their own things, using the blind person’s money.
Other forms of abuse include those that are directly related to the nature of the person’s disability.
Some helpers can deliberately immobilise the assistive devices that are used by persons with disability, thereby rendering them incapable of carrying out their own daily living tasks.
It’s not uncommon for personal assistance providers to hide the wheelchair of the disabled person, or place it at a distance which is beyond his or her reach, so that he or she is unable to move from one place to the other. Saxton quotes a woman who described the way in which wheelchairs can be manipulated: “The care provider in order to restrict them, somehow turns it off and they cannot turn it back on. Or takes the clutches out, or somehow make it inoperable.
‘‘Then, they are captive. I think that’s pretty common … That’s happened to me.”
Engaging unpaid family members as personal assistance providers has its own advantages and disadvantages.
Some persons with disability state that the advantage of being assisted with a family member is that there is more flexibility and relaxation, particularly in cases where a daughter is a personal assistant to her mother.
In such cases, the mother does not hesitate to direct the daughter on how she wants to be assisted and supported, what she wants to eat, how she wants her food cooked or how she wants the house cleaned and the times thereof.
On the other hand, some persons with disability feel that they are better off with outsiders than family members.
That is so because with an unpaid family member, they may end up holding back their needs so that they do not turn out to be a burden.
In addition, some family members may shout at the person with disability if he or she requests for assistance.
For example: “Why are you asking me to help you bath now, did I not tell you that I want to clean the house first, or did I not tell you that I want to go to town first, how many hands do you think I have?”
Some family members may also be over caring and over controlling of the person with disability, to the detriment of his or her psychological well-being.
Such family members may offer to do too many things for the affected person, without leaving any room for the disabled person to do his or her own things.
If the person with disability refuses to accept other forms of help, he or she may be accused of being ungrateful to the kind family members who want to assist him or her.
Persons with disability should be encouraged to voice their opinion in relation to the kind of personal assistance they desire or receive; holding their views back is detrimental to their health and well-being.
In turn, personal assistance providers should communicate effectively with persons with disability. In other words, both persons with disability and personal assistance providers should communicate their feelings, so as to build a meaningful working relationship.
In any case, it’s not just about a person with disability figuring out how the helpers are abusive to him or her but it is also about the person with disability asking him or herself, if they are at all being abusive to their helpers.
The idea is to realise that the work of personal assistance providers is also embedded with a multitude of challenges, which may include long hours of work and no pay or very little pay.
On the other hand, personal assistance providers should also not take advantage of persons with disability, on the grounds that they are disabled, but mutual relationships of trust and respect should be built.
Dr Christine Peta is a public healthcare practitioner who, among other qualifications, holds a PhD in Disability Studies. Be part of international debate on how best to nurture a society which is more accessible, supportive and inclusive of disabled people. Feedback: [email protected]
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