LIVING WITH DISABILITY: JOSEPHINE’S STORY Disability is not Inability

BY RABECCA GOMBE

Living with disability has its own challenges and this is the story told through this Millennium TV program to show that life is life after all is said and done. Everyone struggles in some way and have their own coping capabilities. Here is ….

Question: Joining us today is Madam Josephine. Maám thank you very much for joining us.

Answer: Thank you and I am very happy to be here

Question: Just run us through some of the challenges you face in your daily routine. It could be when you are at work, home and how you get to overcome these challenges.

Answer: Ok . I think the challenges should be in line with the disability that I have. The disability that I have is physical. My right leg, I walk with a limp. It was as a result of polio injection that was done in the nerve there. They said that the nerve centre was damaged when I was about 3 years. That’s when I got paralysed. Now about my daily work. From the look of things, I just look like any other person. When I wake up, I pick a broom and start sweeping. If I feel there is too much pain on my back, I then pick an upright broom so that I stand. That one is ok because it even helps you with your posture. So I  just wake up and my day starts at 04;30 hours.

Question: Oh wow, really?

Answer: Yes. Because I am a mother. I have a child who goes to school. So I have to prepare. And let me even mention that even that other child I am talking about who is at home has also got a disability. For him I think it’s genetic but he has it. Like I said I wake up, start sweeping, cooking. I do what I need to do. It’s a pity you didn’t come earlier or you would have found me doing all these chores and my place is just like this . I am a woman and as far as I am concerned, I just do all these things. It’s also normal for me to do them (chores).

Question: You have spoken so well about your role as a mother in your home and this has actually given people a different perception of what people think. My question is has the perception of other people affected you in anyway or  your life?

Answer: I think if you start listening to people it can affect you. But I think that the people who are not your neighbours or relatives might think that you are not able to do chores but the people you are living with, could be neighbours or people in the house, they know that we work, they know that I am able to work. The only challenge is that is lifting things that are heavy. That is where maybe the challenge and even those things I know how to handle. If its lifting with one hand I know and even those that require both hands, I know how to do it. I water my garden and sometimes I don’t use a hosepipe, I use a bucket. I also have to exercise, sometimes you stretch your muscles. So I think we are able to do everything. I able to do everything. Cooking on a blazier should be the most difficult but I am able to do it. And why should I live in a dirty surrounding just because of a disability. I am able to clean. But the perception of people is that you should not do anything or maybe just do some of the work. That is not good and in fact that is where the stigma starts from because they might think, she is not supposed to be doing this but she is doing it, why? Maybe she is proud, maybe she doesn’t want to be helped. But honestly speaking and to tell you the truth my dear, even the people to help you are not there. They can talk about you not doing anything, but they are not there or asking to help. If you ask a person to help and they do it once, they wont do it again so how do you live? So you have to know how to live. Of course it’s a disability and it’s only a challenge. It’s not an inability.

I have seen people without disability that may  hurt their leg and will be using clutches for one to three weeks  and they will be doing chores/ That’s the way it is. So as far as we are concerned, if you have a disability and if the disability is permanent, for you it is normal. That is your life.

Question : Ok. Tell us some of your hobbies. The things you like doing when you are done cleaning. When it’s time for you.

Answer: I love music. Singing and gardening because I like eating vegetables. I also love plants so I spend time caring for plants. I am very much interested in vegetables and plants, so this is what I do.  But I also like to gather young people and just help them with school work. I told you I have a  child with disability and because of the disability, sometimes he doesn’t go to school when he is not feeling well, so I teach him at home. But it’s boring if it’s just him so I call his friends and teach them.

Question: You said you can sign.

Answer:  Yes I can sing but I also love to listen.

Question: When you talk about stigma what strategies do you use  to ensure that your son with a disability doesn’t get affected as he grows up?

Answer:  The first thing is that it is very difficult to fight stigma. So one strategy I have used is not to compete but those things which I know that yes I have disability I told my son that do them very well so that society can see that if there is a problem in one area, it doesn’t mean that you cant excel in others. I do public speaking and I encourage him to do that. I encourage him to be involved in all activities where he will be using his brain like talking because  when it comes to running about like playing football, he wont manage that. Where  there is no challenge, we should be seen to do our best. Like that society can begin to respect us.  If I have a disability like I am blind or deaf and then I start begging as if the rest of the body is disabled. That one is a No. That’s why there is stigma because people will says oh here comes a person with a disability and they will just be taking and freeloading and wont do anything. So we have got to see that the kind of life you are living, people will respect you. Don’t become a beggar.  Don’t be a problem in society. Be a leader of some kind. In fact, you would be surprised that where I stay, I am often always the chairperson of this and that chilanga mulilo, kitchen party. So there is something they see that this lady will do to help us. Just last week, we were taking chilanga mulilo somewhere, I was the chairperson and we are going to the kitchen party, I am still the chairperson. So you can see that there is some leadership I am able to generate and so like that even the stigma can become less.

Question: Ok . How do you think work places can accommodate people living with disability because we know that they struggle to find a job when you are differently abled. How best can companies accommodate people with disability?

Answer: One is the infrastructure in that company should be accessible. For example, I am in clutches, it is very difficult for me to go on stairs. It is difficult and I can slip and fall and for a  wheelchair it is the same. So if the environment is accessible, for example the way I seeing here, it is just to roll myself and it into the building. And then again when you are in a building, there is what I call reasonable accommodation, for instance if I am not able to move, let the table be at  my level. Let the things I am supposed to use, whether it’s computer, let all be near me. If those things are there and I don’t have a problem with  my eyes, I will perform just like everyone else. But the problem is the environment where I am supposed to work. If there are stairs, it becomes a barrier. It will bar me and even you will say if we employ her, how is she going to navigate. So lets make the work environment accessible.

Now, there are some disability where someone is deaf, so there is need for interpretation. Let people in the office learn sign language so that they can assist. So that if I am using sign language, there will be someone interpreting.

The same goes for those who are blind. They will need an assistant to say oh here is the computer, etc. Because we work. How do we run our homes and we have raised families.

Employers should seriously consider people with disability because whereas you may be rushing off for lunch or run errands, I know that I wont manage so I will continue working. I wont just sit there just because it is lunch time. But for you people without disability, you will go and come back 2 hours later.

Question: so for you it will be easy to say I will make myself lunch and during lunch time, I will be working?

Answer: Yes.  People with mobility disability, we don’t move about because I know I am slow. If the lunch break is an hour, I wont have time to find a bus to get to town, so we just stick to the office.

Question: That’s really inspiring and speaks about efficiency.

Answer: yeah. Can you share the time you actually encouraged someone with disability to look at life the way you do?

Answer: Yes, a lot of friends say they just learnt from how I carry myself.  A disability is something that is permanent and worrying or crying wont change anything. If any thing, it may become worse because now you are not applying yourself effectively. I always encourage other and some have confessed that I inspire them with the way I handle myself and my child with a disability. I tell people that you can live a more meaningful life with disability  than without . Some people become careless thinking oh I am beautiful and they get diseases and die.  So we wonder why people are wasting their lives like that. For us, life has already dealt us a blow so we know that in life things happen and we are careful. We have organizations to encourage each other.

It is also important to acquire an education. Education is very import. It adds value to yourself. When my purpose is over, I expire but while I am alive, I should live a fruitful life.

Question: You are several boards, what are some of your roles?

Answer: a board has many responsibilities including policy formulation and we direct how this is done. We have to make sure that work is done according to the way we want the organization to be run.

Question: what are some of the most beneficial support you have got?

Answer: The first board  I was on was NADO. It has shaped me into who I am . It has told me how to represent others. Sometimes where I go I have to make decisions on behalf others. As a woman you have to add value to yourself through education. I have to appreciate my gender and even the disability because had not been for the disability some of the places I have been to, I don’t think I would have been there because it was specifically for disability.

I have also learnt from other boards. I learnt to manage children with disability.

Question: How do you think the media has helped to address the issue of disability and what is your advice to them:

Answer: I think the media has done a good job. In the past we would see stories of people with disability doing wrong things and this is the negative narrative which was being promoted. Now you are concentrating on the positives because even people without disabilities also make mistakes. Bring out positives to encourage but caution us when we go wrong.

Question: From your experience, you have nurtured your child with disability and encouraged him to push forward, can you give advice to parents in similar situation like you.

Answer: some children look down on parents with disability and I want to encourage such parents not to hide their disability.  I know of a parent who is a double amputee but with artificial legs and the children never knew the truth. So when they discovered, they were shocked and had to start learning how to deal with that. For parents with children with disability it is wrong to hide the disability. Let the child know to deal with the disability and find his space.

This article is support by WAN-IFRA WOMEN IN NEWS, however, views expressed here do not represent the view of WAN-IFRA WOMEN IN NEWS.