Against all odds: How PWDs struggle to access services

It is not until I am ushered into her office by Milly Nambolanyi, her interpreter that I realise that Iyute is the person with a hearing impairment I am to meet.

Still puzzled by her condition, I set about asking Iyute how she manages to handle life’s challenges. The mother of two, who is the programme officer for HIV/Aids at NUDIPU, immediately indicates how she finds it very difficult to understand programmes broadcast on television.

“We have a problem of sign language interpreters in Uganda. Most of the TV stations have no interpreters during the reading of news, except UBC. NTV and WBS only offer interpreters during the summary of the weekly news bulletins on Sunday. But these are just reviews of the week, hence not current. We want interpreters during the daily news bullets,” Iyute says through Nambolanyi. I then ask how she copes with this problem.

“I have a son who sometimes helps me to interpret. Other than that, I always wait to get assistance from a helper here at office,” Iyute, in whose family having hearing impairments is hereditary, says.

As a committed Christian, she has managed to find solace in attending St Luke Church, Ntinda, where there is a provision for the deaf. Other churches, she says, have no such provision, making it difficult for her to pray from there.
On how she accesses hospitals, Iyute says most facilities, especially private ones, do not make any provision for the deaf. So when she gets to any hospital, she writes on pieces of paper which she gives to the nurses and doctors.

At Mulago hospital, the Uganda National Association for the Deaf (UNAD) has made arrangements to train health workers in use of sign language. This, Iyute says, means that when she wants to visit the hospital, she visits the special needs department and makes an appointment with the trained nurses. Many other hospitals, however, do not have such arrangements, making it difficult for her and others.

When it comes to most schools, Ms Iyute says many teachers have no idea about sign language.

“Nowadays we are lucky to have special needs schools such as Wakiso School for the Deaf and a department of special needs at Kyambogo University. But more needs to be done because even in mainstream schools, there are deaf children who can hardly communicate with their teachers,” she adds.

And even then, facilities are not enough in terms of teaching materials, personnel and quality. “Most of the special needs schools where my colleagues take their deaf children offer poor quality education. The government needs to provide funding to such schools.”

Iyute is grateful for places like the Gender ministry where there is a department for special needs, but for other government offices, it’s always a challenge as she has to first write down the information she needs before she is helped. This sometimes takes time hence urgent matters are not dealt with immediately.
Asked about her worst experience as deaf person, Iyute alludes to her life at Lwala Girl School, Soroti in the 1990s.

“In school I was the only deaf person. There was no interpreter and I used to copy notes from a friend. On certain days, she did not come to school, I would also miss out on what the teacher would teach,” she says.

“During time for practicals, I had no idea about what was happening. The teacher did not even know sign language. I almost dropped out of school.” Later, she obtained a certificate from the department of special needs at Kyambogo University, and, thereafter, continued and obtained a diploma and later, a degree.

Iyute also laments about the difficulty many deaf people and PWDs up-country face. During an HIV/Aids training workshop in Karamoja in July, I met many people from Moroto, Kotido, Nakapiripirit and Napak, but they said it was their first time to see a disabled person as educated as I am,” she says. Another problem the PWDs face is that the government sees it as an extra cost to employ a deaf person and an interpreter, so many are not employed, Iyute says.
She also says access to information is a problem since most of them are not educated and therefore, lack self-esteem. “Most people who come to me here want an explanation on how to protect themselves from HIV/Aids. Whereas this information is available to other people, most of the deaf and the blind do not have it,” she adds.

Her appeal is to the government to put more emphasis on educating PWDs alike to lift their self-esteem and empower them economically.

EMMANUEL CANDIA

Emmanuel Candia is an advocate at Candia Advocates and Legal Consultants. The 33-year-old father of one, was diagnosed with polio when he was one year old. His legs are paralysed and he uses a wheel chair. The location of his office on Level Three of Social Security House where I find him makes me wonder how he is able to get up to this level. “I opted to set up my office here because at least this building has a lift, and parking on almost all levels,” he says with a smile.

But when asked about other public buildings the smile disappears. First, he complains about the structures in courts of law. “While defending my clients in court, I have no provision in terms of where to position myself,” he says. “There are steps in front of the judge and sometimes I have to speak while seated on my wheel chair, below, among the other court attendants. This sometimes leaves me disadvantaged.”

He cites the Anti-Corruption Court where the chambers are on the second floor of the building and there is no lift to get there. He also says the toilet facilities that would favour PWDs are restricted for use by magistrates and judges; they are always locked, hence not available to any person. Candia also complains about the facilities in many police stations in the country.

“Prisoners with disabilities are also locked up in the same conditions as the able in the cells there. I have seen this while going to check on my client. Very unfair,” he says.

The public transport system is also a menace for him. “I can’t even use public transport. No taxi operator would be patient with my condition. I can’t even sit in there with my wheel chair as it takes more space than the seats there,” he says. Thanks to his driver, Candia says he has managed to access all these places. The electronic wheelchair which was given to him by his father, has simplified his movements.

Although life is a little easier now, it was not always like this. Candia says his school days were some of the worst he has ever experienced.
“As a kid at Muni Primary School in 1990s, there was no provision for people like me, I struggled to access toilets or urinals at school. In fact I spent all my time without visiting school toilets. I would wait till evening when I would return home to use facilities there,” he says.

Nevertheless, Candia says it was such lack of consideration for children with disabilities that motivated him to work harder and emerge on top of others. At Mvara Secondary School in Arua District, the structural set up was no different but he managed to cope by using the toilets at home since his father was the school head teacher and stayed within the school boundaries.

Candia says this state of affairs did not change even when he joined Uganda Christian University, Mukono for his degree course. The lecture rooms he says had many steps and he could hardly move.

“I had to complain to the academic registrar to at least enable me study in one lecture room without moving. This was done and we studied in one place at the university for the time I was there,” he says. Nevertheless, Candia insists disability is not inability, stating that disabled people are just like the rest.

“I have not failed to handle any court case because of my condition,” Candia says. He also urges parents not to abandon children with PWDs. “My father has been supportive all through. I am now a successful lawyer. Imagine if I had been ignored and left to suffer. Parents must support their disabled children in every way possible,” Candia says.

DAVID NANGOSI

The first time I meet David Nangosi, he impresses me as a person teeming with confidence. As he ushers me into his office at National Union of Disabled Persons of Uganda (NUDIPU) office in Bukoto, a Kampala suburb, I am struck by his passion for people with disabilities (PWDs).

The 26-year-old, who moves with the aid of a crutch, is the NUDIPU Role Model Project Mentor for youth in eastern region. He was disabled in his Primary One when one of his legs was diagnosed with osteomyelitis, an infection of the bone that eventually saw his leg operated and bones removed.

Asked about the main challenge of accessing public buildings in the city, Nangosi says many public and private buildings are unfavourable for him and generally for people with physical disabilities.

“Recently, I faced hardships trying to reach the UNEB Executive Secretary at UNEB offices in Ntinda because of many steps right from the police check point at the entrance to the offices up there. If that happened to me, what about another PWD, say in in a wheel chair?” he says.

Nangosi says while some institutions have come up with some developments, for example, electronic elevators installed in some buildings, more still needs to be done to solve mobility challenges.

As a mentor for youths, Nangosi says he has encountered several challenges while seeking to meet youth in courts, police stations and schools.

“Some court structures and police stations are upstairs with many steps. Most churches also have many steps at the entrances. Many school facilities, universities and other tertiary institutions do not have mobility accessible facilities for PWDs like electronic elevators and ramps,” he says.
When it comes to accessing public toilets in buildings, Nangosi says there is limited provision for people like him.

“The facilities are not disability-friendly at all. It’s a struggle to squat on some of those toilets,” he says.

Nangosi also says in many offices, negative attitudes towards PWDs are far from over. “When I attempt to make appointments with most bosses there, I am perceived to have gone there to beg. Even when appearing before a panel for an interview, on many occasions my disability is considered first than my ability to work with all the mental abilities bestowed on me,” he says.

Nangosi alludes to his life at Uganda Christian University (UCU), Mukono while pursuing a Bachelor’s degree in Laws in 2010 as one of the hardest times.
He says at the time he joined, rights for PWDs were never on the university agenda.

“We PWDs, especially the blind, lined up for meals, and library books with the rest of the students. You could see we were struggling to cope. The physically handicapped were nonresidents, walking distances of up to 6km to access hostels,” he said.

As a result, Nangosi says he formed the Disability Students Association (DSA) through which they asked the UCU Dean of Students to exempt PWDs from lining for meals and library books. They also asked to be exempted from being non-residents and instead be accommodated in nearby halls of residence.

“We constantly complained of university structures and one day I interfaced with the vice chancellor on the same.”

Nangosi says his efforts paid off, with the university administration setting up the Hamu Mukasa Library at UCU with electronic elevators, ramps and toilets that were friendly to PWDs. He also says PWDs currently attend lectures on the ground blocks.

Nevertheless, Nangosi is appreciative of associations such as NUDIPU and Compassion International which have helped him to get to where he is now. He particularly singles out Compassion International which helped sponsor his education right from primary to university.

Nangosi is appreciative of government efforts towards bettering the conditions of the PWDs. On the affirmative action, he says students with disabilities joining public universities have 64 slots to acquire free university education. In banks, he says PWDs are treated fairly. He believes though that a lot more needs to be done.

At the end, however, Nangosi believes one’s attitude counts a lot and he alludes to what Abraham Lincoln, the 16th US president once said: “Your own resolution to succeed is more important than any other thing”. He says destiny is not a matter of chance but of choice, adding that PWDs should believe in themselves.
“Nothing in the world is impossible. It always seems impossible until it is done and attempted. Let us light the candle instead of cursing darkness. This has been my life philosophy and it is food for thought for you.”

VALERIAN NANTAMBA

Valerian Nantamba is a member of staff of the Uganda Red Cross Society. The 30-year-old, who has a vision impairment is popular at the offices in Mengo, a city suburb. When I go seeking him, the security guards and receptionist at the gate all know him.

When I meet him and as we walk through the corridors, the other employees stop to greet him. I later learn that Nantamba’s outspoken views about the state of PWDs in Uganda and the general political climate have won him a lot of respect among his peers.

When asked how he moves about his business on a daily basis, Nantamba says it is a struggle.

“At university, I used to have a guide but now I cannot afford to pay him. So I rely on my wife’s guidance but sometimes my wife also has other home chores to do,” he says.

The Kyambogo University graduate says at university, guides were paid between Shs200,000 and Shs300,000 per month, which he says he and many other blind people cannot afford.

Nantamba also says he struggles to access basic information from newspapers or any other reading materials because such information is not written in braille. He also says braille machines are expensive and not available. Nevertheless, Nantamba has received support from NGOs such as Action on Disability Development (ADD) Uganda, and the Uganda National Association of the Blind (UNAB) who have trained him on how to use and access braille and some computer programmes for the blind.

Asked how he attends church services, he says much as he is always welcomed, there is no provision for the blind there. “I would want to have braille verses that I can also easily refer to in church but I don’t have them. In fact, most of these churches look at you as a sick person and want to perform miracles on you.”
The father of one is also hurt that people with his condition are simply led to vote, and do the actual voting themselves.

“We do not have braille ballot papers yet we have requested for this for long,” he says.

Nantamba also says efforts by the blind to meet their leaders and access public offices to address their issues have fallen flat.

“On several occasions, I have written many letters to our leaders addressing our plight but to no avail. On many occasions I have been made to line up for long hours before being assisted at offices of politicians,” he says.

Nantamba’s desire to access services better also led him to write a letter to the President, asking to meet him and discuss the condition of the PWDs in the country.

“I also wanted him to help me get a special laptop that I could use while still at university,” he narrates.He says when he failed to get an immediate answer, he went to the President’s office at Parliament where he met the private press secretary to the President.

“I met a lady called Viola and she really handled me well. I gave her my letter and after two weeks, I was informed that I had been given the laptop and that I would keep getting a monthly stipend of Shs200,000 to help facilitate me,” he says.

Nantamba says although he received the money for a year, the assistance stopped suddenly and despite numerous letters seeking explanation, nothing has come his way.

Natamba’s dream is to unite all PWDs up-country into regional associations that can help them access services and find jobs.
“Many PWDs in the villages are ignorant, uneducated, unemployed and do not know their rights. I think uniting them and sensitising them will help improve their condition,” he says.