This was UNAPD’s first major project and was supported by the Dansk Handcap Forband. Through the project, UNAPD was able to mobilise people with physical disabilities and formed associations. The project also built the capacity of members, staff and board in areas of lobbying, advocacy, leadership and group dynamics. It was implement from 2005-2007 in the districts of Iganga, Tororo, Masaka.
By James Mwandha
On December 29, 2009, members of UNAPD held a General Assembly (GA) where they elected a new Board of Directors to lead them in the next four years (2010-2014). At the same occasion, members approved a new UNAPD’s Constitution and Strategic Plan 2010-2015. The 2nd General Assembly was held at Community Based Rehabilitation Alliance (COMBRA) in Seeta, Mukono, where over 100 delegates attended.
I was re-elected unopposed as Chairman and so was Arthur Blick as Vice-Chairman. Other members of the Board re-elected were Elizabeth Kayanga (Women Representative), Crispin Oketchogara (Western Region Representative) and Ann Mary Nabwire (Eastern Region Representative). The new members are Arch Goffin Chandria (Treasurer), Mpindi Bumaali (Central Region Representative), Fabiano Opira (Northern Region Representative) and Miriam Kiconco (Youth Representative). Congratulations to you all.
We thank Connie Tinka, the Executive Director of Katalemwa Cheshire Home, who performed the role of returning officer at the elections. The elections were no doubt democratically conducted and were free and fair.
To the old Board members, I am sure we were re-elected basing on our achievements and I implore you to consolidate our achievements as we work for more.
We as the new Board were elected because of the potential the electorate recognised in us to steer our organisation to greater heights. I urge all my Board colleagues not to let down our members and that we should execute our mandate to the satisfaction of them all without fear or favour.
The leadership we were entrusted with is not a simple voluntary matter as it seems. It calls for enormous commitment, transparency and accountability in the exercise of our duties. I know you all have these leadership qualities, in addition to many others, but it is a great challenge to put them into practice.
The Board is coming in at a time when UNAPD is preparing for negotiations to develop a new partnership with our partners in Denmark to transform the organisation from the current project-based to a programme-based approach. This is a great opportunity for our organisation’s transformation and our input and commitment to this exercise will be very valuable. We expect this exercise to kick off in January 2010, with the arrival of our partners led by Michael Larsen of DHF.
I take this opportunity to thank the Honourable Sulaiman Madada, the State Minister in Charge of Disability and Elderly, who graced our General Assembly as Guest of Honour and performed the opening ceremony. On behalf of the General Assembly I wish to thank him for an excellent address he delivered on the occasion. I would also like to thank Honourable Alex Ndeezi and Honourable Sofia Nalule (MPs representing Persons with Disabilities in Parliament) for honouring us with their presence. Our thanks also go to the Country Representative of ADD and Francis Kinubi, Chairman of NUDIPU, among other stakeholders for attending the opening ceremonies.
To UNAPD members, I thank you for taking time off your celebrations for the festive season to attend the GA, and exercising your democratic mandate to elect your leadership.
The out-going Board transformed UNAPD to its present state; from a period of no project at all to a period of five successful projects. On behalf of the entire UNAPD membership I wish to appreciate the role it played in the development of our organisation. For those members of the Board who were not able to make it to the new Board, are a resource to UNAPD. We shall keep on consulting them for advice from time to time to tap on their wide body of knowledge, skills and experience in giving direction to UNAPD.
The General Assembly would have been difficult to organise if it were not for the support we received from our partners of DHF, DBIA and ADD. We thank them for the financial, moral and technical support and guidance we received from them. This enabled us to carry out democratic elections, revise UNAPD’s Constitution, approve the Strategic Plan for the next five years and generally account to our members. We look forward to continued good working relationship between the new Board and our partners in the year 2010 and beyond.
Finally, we call upon the general membership of UNAPD to work closely together with the Board as we struggle to fulfil our mission of “removing barriers in society that prevent people with physical disabilities from enjoying full rights on equal basis with other citizens”.
NB: For more related articles and pictures about GA, go to the November-December 2009 edition of UNAPD Newsletter
With the introduction of Accessibility Standards, those participating in the construction industry must observe the Standards in new constructions and as much as possible during reconstruction and renovation of existing structures. I call upon the designers of physical infrastructure to utilize them so as to ensure persons with disabilities equal access to the various services.
Sulaiman Kyebakoze Madada (MP), Minister of State
When you are building there are things that you may think are not so important yet they are very important to persons with disabilities.
Phyllis Kwesiga, Architect
The Standards are good for the start (in providing the requirements) for accessing buildings. They will support the Building Control Bill when it is enacted.
Eng. Henry Lubega, Ministry
of Works and Transport
We the architects shall make good use of the Standards to improve accessibility. Qualified architects are aware of accessibility and we shall continue to remind them, but the problem is that we also have unqualified architects who draw building plans and these ones may not mind about accessibility.
Architect Enock Kibbamu, President Uganda Society for Architects
The UN Convention on the Rights of Persons with Disabilities provides for the development of Accessibility Standards. Accessibility is a human right, and these Standards will play a great role in improving accessibility in Uganda.
Dimitri de Gruben, Assistant Human Rights Officer, Office of the UN High Commissioner for Human Rights.
The document is very detailed and provides the Standards for almost everything; it includes ramps, toilets, ATM machines, among others. They will go a long way in improving accessibility in Uganda.
Hon. William Nokrach,
MP for PWDs.
Uganda has a disability-friendly legal framework which guarantees the rights of persons with disabilities. Unfortunately, there is limited implementation of these laws. Among other things the laws provide for accessibility in the physical environment. One of the reasons why it has been difficult to implement the legal provisions on accessibility is the absence of Accessibility Standards.
Chairman Board of Directors,
It is as a result of this realisation that UNAPD in collaboration with various stakeholders developed these Accessibility Standards. We call upon all stakeholders in the construction industry to play their part in making Uganda a barrierfree society by implementing these standards.
Hon. James Mwandha, Chairman UNAPD
The Standards should be incorporated into the Building Control Bill to make them a little more applicable. And the audit team should identify and inspect all buildings that are not accessible.
Grace Nabakooza, Forum
for Uganda Employers (FUE)
UNAPD members and partners were all smiles on May 27, 2010 as the organisation launched Accessibility Standards at Grand Imperial Hotel, Kampala.
The atmosphere was orange and grey as many of guests at the launch were dressed in orange and grey T-shirts with messages: “Make buildings and other facilities accessible to PWDs”.
The Chief Guest Dimitri de Gruben who represented the UN High Commissioner for Human Rights launched the Standards, a book that guides stakeholders in the construction industry how to design and put up facilities accessible to all people including persons with disabilities.
“Accessibility is a human right, and these Standards will play a great role in improving accessibility in Uganda,” Dimitri said.
Rie Ollendorff (an accessibility consultant from Denmark) and Phyllis Kwesiga (a Ugandan consultant architect) supported UNAPD with the technical knowledge of developing the Standards. The consultative process of developing the Standards, that involved many other stakeholders and partners, took two years.
The Minister of State for Elderly and Disability Affairs, Sulaiman Madada, delivered a key note address, and highlighted Governments policies, legislations and programmes aimed at making places accessible.
The launch was attended by UNAPD staff, Board Members, representatives of selected member district associations, representatives from the Ministry of Works, Ministry of Housing and Urban Development, Ministry of Justice and Constitutional Affairs, and Ministry of Gender and Social Development. Others were from Uganda National Roads Authority, Uganda Society for Architects (USA), Disabled Peoples Organisations, among other stakeholders and partners.
At the occasion, the eight-member National Accessibility Audit Team was unveiled, and commissioned by the USA President, Enock Kibbamu.
The team will assess for accessibility buildings and facilities and where necessary, give professional advice to the developers for possible improvement. The team will issue a Certificate of Accessibility Compliance to every developer with an accessible building.
For more information about the Standards, refer to May-June 2010 UNAPD newsletter in the newsletter section
I wish to share with you about a strange challenging condition called arthritis. Arthritis is a broad term referring to a disease that causes a lot of pain in the joints and muscles. It has many types among which is rheumatic arthritis.
Rheumatic arthritis is a serious disabling condition marked with fever and pain in muscles and joints that usually results into disfiguring of some body parts. When severe, it doesn’t only affect the joint and muscles but also other body organs like the heart, liver, the kidney and teeth.
Rheumatic arthritis is a unique physical disability, hitherto not familiar in the disability movement and by medical practitioners in Uganda. In its early stages, rheumatic arthritis is misinterpreted for sickle cells.
Persons suffering from this health problem are often considered patients and survive on drugs and could gradually degenerate into primary and secondary disabilities.
I am a woodwork and technical drawing teacher by profession. At 18 years of age, I started feeling pain in the knee joints and fever. The pain was on and off, so I initially didn’t take it serious. I just swallowed pain killers to suppress the pain not until 2005 when the pain became unbearable.
By then I could hardly stretch my arms to write on blackboard, could not hold tools like panes and saws. I could also hardly bend my back, squat or perform the simplest exercises yet I was a great footballer. I had to give up the good game due to stiffening joints, weakening muscles and severe pain I was experiencing. I was teaching in Masaka Technical College by then, where I visited different hospitals but with little help.
Salvation came my way when I met a friend, Irene Nabifuge (who is also suffering from the same condition). I explained to her my condition and directed me to Dr. Ssekasanvu at Mulago Hospital, who diagnosed me with rheumatic arthritis. I started treatment and after a few days I became ‘alive’ again.
Although I still feel the pain, the condition is not the same as before starting on the treatment. I have also learnt to cope up with the disability. Special thanks to our doctors Mark Kaddu and Ssekasanvu of Mulago Hospital.
Copying up with this disability highly depends on changing of somebody’s lifestyle where you have to:
- Give your doctor a complete medical history including illness and medical forms. This enables the doctor to choose the best treatment plan.
- Take all medicines as prescribed by the doctor.
- Keep away from cold conditions to avoid stiffness of joints .You should also keep wearing warm clothes.
- Attend counseling sessions. Since this condition is incurable, living with it needs adequate counseling in order to positively live with it.
- Stop or avoid smoking. Smoking increases the risk of arthritis.
- Eat a balanced diet and take a lot of water, fruits and vegetables.
Absence of medical facilities and adequate trained medical workers to handle the disease. There is only one rheumatology clinic in the country at Mulago hospital. The clinic operates once a week, only on Fridays.
Dependence on medicines comes with side effects such as ulcers, dizziness among other complications.
Continuous pain and discomfort.
Patients become progressively weak, making them unable to carry out their duties and activities of daily living.
Dependence on expensive drugs, which patients have to buy for themselves. The majority cannot afford the drugs and therefore have to stay in dire pain and some of their body parts becoming deformed.
Drugs needed by the patients are not recognised by Government as essential
drugs and therefore neither subsidised nor available in all district hospitals.
Assistive devices like neck braces and other joint supports like splints for weak limbs and deformed fingers are not available and they are expensive.
Mulago Hospital, the only hospital in the country that has a specialized doctor (rheumatologist) is far from most of the patients. So they have to travel long distances to attend the rheumatology clinic.
Inadequate counseling services to support the patients about the physical and social pressures.
Limited information about rheumatic arthritis is available. For example, about how to manage it, where to get services, peer support, etc.
The society and even those affected by rheumatic arthritis do not know much about it and therefore blindly struggle.
Limited opportunities for income generation especially when ones body parts become deformed or because of ill health.
Arthur Jjunju and Irene Nabifuge are members of the Rheumatism Wing of UNAPD, a thematic group of people living with rheumatic arthritis. With the help of UNAPD, this group has formed a national association called Rheumatism Association of Uganda (RAU). Jjunju shared this experience with people who attended the rheumatism conference organised by UNAPD in March 2010.
I was born on July 20, 1976 in Buhimba Sub-county, Hoima District. I developed polio in infancy but I survived it though it paralysed my left leg. I started walking with the help of two crutches at the age of eight years. However, later on, I regained some strength in my legs particularly the right one and abandoned using the crutches. The left one remained weaker and smaller. As a single woman, my mother struggled to raise me, though I was later taken over by my father after perhaps realising that I could succeed in life in spite of my disability.
I started going to school at the age of 10 years and completed Primary Seven in 1992. I later joined Duhaga SSS for O’level education from where I proceeded to Duhaga Primary Teachers’ College. I graduated as a professional teacher with a Grade III Teaching Certificate. I am currently pursuing a diploma in education while teaching science to Primary Six and Primary Seven at Bujalya Primary School.
Because of my determination, I have managed to achieve the following:
- I am a football referee with a certificate from National Council of Sports
- I have a certificate in Special Needs Education
- I have managed to construct my personal house
- I am married with a child
- I am the secretary of Hoima Persons with Physical Disabilities District Association (HOPDDA)
- I am also the chairperson of Kisiiha Disabled Persons Association in my parish
- I have also acquired different skills and knowledge in lobbying, advocacy, and financial management.
In the schools, I was called several nicknames like Kaguru (small legged), Byaramayodo, among others, but this didn’t undermine my self-confidence and esteem. I was so active as I participated in drama and football.
While in primary school, I had a fellow classmate who bullied me by drawing the picture of my impaired leg on the blackboard and on the walls of the school buildings. These drawing amused several pupils and they laughed at me.
Surprisingly, later in life, this boy got a motor accident and broke his two legs. He recently approached me asking for a wheelchair. He said he got to know that I was working with some organisation of people with disability and I could therefore help him secure a wheelchair.
I personally have a wheelchair which I don’t even use but I am hesitant to give it to him because memories of what he did to me in school are still stuck in my head.
But I am seeking for advice from UNAPD Update readers whether I can offer that wheelchair to this former bully who made fun of my disability.
“Women are raped”
Edgar Nyabongo, District Police Commander
“The common cases committed against PWDs are assault because people think that PWDs are weak; minor disagreements more especially in business; theft in business and simple robberies. Men also take advantage of women with disabilities and rape them. Some report rape cases when they are already pregnant – when the men responsible for the pregnancies – have abandoned them.
“Much as there are many cases committed against PWDs, they are also offenders. In 2009, two defilement cases were reported against PWDs. May be because of the disadvantage of disability, that is why they rape because they can hardly get women to accept them. They also commit simple theft like stealing goats, probably because they can’t actively be involved in production and agriculture.
I urge the associations of PWDs to work with police to reduce crimes committed against their members. The deaf are not aware that police can help them.”
“My wife was taken away’
Patrick Rwakabaale, Chairman Ntungamo District
Association of Persons with Physical Disability
“The disabled are seen as a burden. Taxis drivers don’t want to transport us thinking that we are not going to pay. In schools, stairs at premises prohibit children with physical disabilities from studying. In the society, there is a vice of name-calling. They refer to PWDs as Bucherman, Kagulu, or Ekimuga. But I hope that since we have sensitised councilors in Ntungamo about the rights of PWDs, they will pass on this information to their local people and there will eventually be a change.
“In 2001, I applied for a job of secretary at the district. I was not even short-listed by the members of the District Service Commission yet I possessed the required qualifications. I have a certificate in computer applications. I realised later that I was not short-list because I am a disabled person. I made a mistake to indicate my disability in the application letter. They think that PWDs can not work.
“In 2006 I also applied for a job of program presenter on Radio Ankole in Ntungamo. The manager frankly told me that he would not offer me a job! He said I would not manage to keep time because of my movement limitation.”
“I also contested for Local Council (LC) Chairman in my village of Rwangusha in Kikoni Parish, Ntungamo Sub-county. Residents refused to elect me and openly told me that they could not be led by a disabled person.
“I married my wife in 2002 and we produced three children until in 2009 when her family took her away from me. All along they were asking her why she married a disabled man as if there were no able-bodied men. She left me with a seven-month-old baby and I have struggled to raise him.”
“His family pushes him to divorce me”
Mary Kikanshemeza, business lady
“I got a disability when I was seven years old. I slept well but on waking up the following day my right leg was weak. I grew up with a disability and I married in 2003. My husband loves me so much though he is under pressure from his family to divorce me. They ask him why he married a disabled woman as if there were no non-disabled ladies.
“All our first three children have died, and their death in addition to my disability has complicated my relationship with my in-laws. I have just produced a fourth one but I hope God will save this one. May be they think my disability is related to the cause of my children’s death.”
Mary Kikanshemeza is a tailor and also runs a boutique. In 2004, a land lady refused to rent her a house for business because she is disabled, yet she had the money to pay for it. She narrates:
“I approached the land lady but she doubted whether I could be able to pay her. I tried to convince her that I will get money from clients but she could not believe me. I got another house nearby. One week later, she came to my business and was amazed to look at my big stock. She even bought some clothes on credit, and she admitted that she had made a mistake to deny me the house. She said she missed me because according to my big stock and the many clients I had, I would be able to pay her rent very well.”
“I was the first to be sacked”
John Mugisha, former teacher
“I was a licensed teacher and taught in Ruhoko Primary School for seven years (1997-2004). In 2001 I developed sores in my throat that affected my voice even after treating them. I started to find difficulty in speaking and my tone became low. When they were retrenching unqualified teachers I was the first target because I had got a disability. I started my own nursery school but it never took off. I now survive on peasant farming.”
“No sign language interpreters”
Keneth Ayebazibwe, Itojo Hospital
It is a Government and biggest hospital in Ntungamo District. Keneth Ayebazibwe, a Medical Clinical Officer, admits that PWDs are not served well: “A physiotherapist was recruited one year ago but he is not working because he has no equipment to use. We have no sign language interpreters and adjustable beds in the labour ward for women with disabilities. We don’t normally plan for them. We raise these issues in meetings but they are never given priority.”
He, however, said there are a few PWDs who come to hospital, but he could not establish whether it is because there are a few PWDs in the district or because of the unfavourable conditions that deter them from coming to the hospital.
He said the hospital has no sign language interpreter to attend to the deaf patients and their services are not planned for soon. “We always tussle with them. We depend on the interpreters they come with, but we have not come across many deaf patients” he says. This means that in case a deaf patient had no sign language interpreter or could not afford to come with one, he can not access treatment.
“Women don’t come for labour”
Angella Birungi heads the maternity ward, where women give birth
She says her staff give special consideration to women with disabilities by lifting them up to the labour beds.
Asked why the midwives are always rude to expectant mothers with disabilities, she says: “There is no good or bad midwife. Women without disabilities also complain about midwives. It depends on the state you find these midwives. Rudeness arises from overworking and stress. Sometimes a midwife attends to many mothers and this brings fatigue to them. They are also human beings. It is a problem of Government that does not employ enough health workers,” she says.
She also observed that they get a few women with disabilities in the maternity ward: “In the last one year we have attended to only one disabled woman.” Birungi could not confirm or deny the allegations that women with disabilities risk give birth with the help of traditional birth attendants because of stigmatisation, negative attitudes and rudeness of nurses in hospitals.
John Turyatunga, Community Development Officer
and in charge of rehabilitation.
He says the district supports PWDs as they are represented in the District Council and on the Public Service Commission. He says PWDs are catered for in every Government programme and activities, but was quick to add that they are sometimes limited by funds. “The biggest gap is in the budget lines. There are sometimes no sufficient funds to support PWDs to carry out all their activities,” he says.
“In the probation office, we make sure that when PWDs report cases, we follow-up and handle all such cases to conclusion. Common cases are relatives taking property of disabled children, defilement and rape. Our staff also find many cases of child neglect by parents especially children suffering from cerebral palsy.”
As many companies from East Africa and beyond flocked into Uganda to participate in this year’s Uganda Manufacturers Association (UMA) exhibition, UNAPD, through the Labour Market Project, mobilised People with Acquired Brain Injury and Cerebral Palsy (PWABIs) and caretakers to also showcase what they are able to do.
Five PWABIs/caretakers participated in the seven-day show which started on October 4 –10, 2010, at the UMA grounds in Lugogo. The trade fair coincided with Uganda’s Independence Day, October 9, a public holiday that many people and students used to come to the show grounds.
This was the first of its kind for the PWABIs to showcase what they make including jewelries /beads, clothes (bitengi), door mats, cookies (half cakes,bagiya, hard corns, ground nuts) that are well packed and ready for consumption.
The participants from UNAPD included Fiona Mutyaba, Lovisa Namiga, Eseza Nampa, Yiga Abdu and Aidah Zawedde.
“We made good sales and some profits. We were also able to get exposure and interact with other people in similar businesses. We shared vital business ideas and experiences,” Mutyaba said.
As one of the major ways of bringing People with Acquired Brain Injury and Cerebral Palsy (PWABIs) together to develop themselves, they started to hold quarterly meetings where they shared business ideas and experiences.
The first meeting that attracted 20 participants was held in October 2010, where all the 10 Labour Market Project parishes in Kampala were represented. Caregivers of the PWABIs also attended and will continue to attend the meetings. The project parishes include Kyebando, Kanyanya, Mpererwe, Kawempe I & II, Bwaise I, II & III, and Mulago I&II.
The meeting was held at Maama Florence Nakato’s residence in Mpererwe. The major objective was bringing together PWABIs/caregivers, who are involved in businesses and those willing to start businesses, to share different ideas and experiences.
David Mulya, a consultant from International Labour Organsation (ILO) facilitated the meeting. He discussed many business ideas with members like how to start a business; how to manage a business; and how to overcome some of the business challenges.
Mama Grace, a very hardworking caregiver explained how she started her tailoring business on a verandah with a few clients but now owns a big shop of clothes with many customers. She said she has achieved a lot in spite of looking after her 20-year-old daughter, Grace Kisakye.
Caregiver Madina Nanyazi, commonly known as Mama Mbeja, also owns a retail shop in Kanyanya Parish. She also explained how she handles her business and her nine-year-old daughter that she said got a brain injury at birth. She urged other caregivers to balance between what they do and caring for their children.
Many caregivers were inspired by these presentations and said they had started to realise the benefits of their meetings and working in groups to be able to support each other.
Some PWABIs who attended included Ronald Kalanzi (makes door mats and repair shoes) Ambrose Ssewanyana (studying welding), Peter Serubiri (owns a retail shop in Kyebando) and Paul Nsubuga.
The meeting was crowned by cutting a cake, given to the members by UNAPD, with a slogan, YES WE CAN PWABIs, which excited members and named it after the Kanyanya and Mperere groups that merged.
Hon. James Mwandha who has been UNAPD Chairman since the founding of the organisation in 1998 has passed on at the age of 73.
He died of heart failure on November 10, 2010 in Mulago Hosptital and was laid to rest in Namunyumya village in Iganga district on November 14.
UNAPD has dedicated the upcoming edition of the newsletter to his death. Everybody is invited to send condolence messages for free publication in the newsletter.
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Uganda National Action on Physical Disability
Plot 459, Namasole Road,
Kanyaya, Gayaza Road,
P. O. Box 959, Kampala.
+256 (0) 414 692403