The UNAPD

SEPT-OCT ‘09 A bi-monthly newsletter for National Action on Physical Disability VOL. 7, ISSUE 5

Mary Nabifo, a former employee of UNAPD at her wedding with Dickens Miramago. They tied the knot at the Appointed Harvester’s Church (Rubaga Road) and hosted their guests at a reception at St. Matia Mulumba, on October 11, 2009. Another UNAPD staff, Apollo Mukasa, was also introduced by his fiancée, Beatrice, on October 4. See photos on pg5.

INSIDE THIS ISSUE : • Communication from the Executive Director….…………………………………..……….…...2 • Communication from Chairman………………….....……………..…..……….…………….……3 • How to improve PWDs living conditions…………………………...…………….……………….4 • Pictorial…………………………………………….……………………………………………………5 • Rheumatic Arthritis; a peculiar type of physical disability...... …………………………………6,7 • Members start to reap from trust fund……………...…...……..…………….…………………..8,9 • How UNAPD is implementing the PWDs Convention…..…………………………………….10 • The misery of a disabled child who is tied on a rope..……………………….………………….11 • UNAPD Women train in sweater and beads making……………………….…………..…...... 12 • Women steer national volleyball team……...…...….……………….………………..…………12 • And much more.

UNAPD, Namasole Road, Kikuubo Zone, Road Plot 459, Kanyanya, P.O.Box 959, , Uganda Tel: 0414-567541, 0414-566056 OR Email: [email protected] . Website:www.unapd.org WORD FROM THE EXECUTIVE DIRECTOR 2

We have almost come to the end EDITORIAL of the year 2009. Thanks to the partners, members and stake- IDD; time to reflect holders whom we have worked with. It has been a challenging on disability concerns year but we have been able to go through it because of your sup- On December 3, the disability fraternity will flock to Luwero port and commitment. District, to celebrate the International Day for Persons with Disabilities (IDD). The annual observance of IDD, aims to The year has also had a lot of promote an understanding of disability issues, the rights of opportunities that we have persons with disabilities and gains to be derived from the inte- ED Meldah endeavoured to exploit for the Tumukunde gration of persons with disabilities in every aspect of the po- benefit of our organisation and litical, social, economic and cultural life of their communities. membership. I hope we shall continue with this coop- eration even in the New Year. The day provides an opportunity to all persons with disabili- ties in Uganda, to mobilize action to achieve the common goal I thank members who have answered our call of regis- of full and equal enjoyment of human rights and participation tering with UNAPD in your respective district associa- in society by persons with disabilities. tions as individual members. Particular thanks go to the district associations that have registered more than the The day’s theme; “Making the MDGs Inclusive: Empowerment required minimum number of 50 members. I once of persons with disabilities and their communities around the again remind you that membership registration is a world”, blends well with the international PWDs quest to fully continuous exercise and you should not stop after reg- and equally enjoy human rights. All efforts of Disabled Peoples istering the required minimum number. The more Organisations should be geared at making sure that relevant members you register the bigger and stronger your players in Uganda’s development appreciate that without mainstreaming of PWDs in all society’s activities, no single district association and UNAPD will be. Millennium Development Goal (MDG) may be achieved. Registration of individual members is a condition for The MDGs are goals to be achieved by 2015 that respond to any district association to qualify to be a full member the world's main development challenges. They were drawn and be able to benefit from UNAPD programmes. from the actions and targets contained in the Millennium Dec- In the month of November, UNAPD hosted Ole laration that was adopted by 189 nations during the UN Mil- Ansbjerg and Lene Van der Keur from the Danish lennium Summit in September 2000. Sports Organisation for the Disabled who visited The eight MGDs are: eradicate extreme poverty and hunger; Uganda/UNAPD to learn about the involvement of achieve universal primary education; promote gender equality persons with physical disabilities in sports activities. and empower women; reduce child mortality; improve ma- Sports is one of the areas where persons with disabili- ternal health; combat HIV/AIDS, malaria and other diseases; ties have not actively been participating, yet they ensure environmental sustainability; and develop a Global equally enjoy the games and can play like the able- Partnership for Development. bodied. A few people even in the sports field are aware that PWDs can participate in most of the sports 80% of PWDs (400million people out of 650) live in poor activities and greatly contribute to the development of countries like Uganda where there is a strong link between disability and poverty. Today for instance, statistics on PWDs the game. employment are really appalling. In developing countries, 80- During their two days stay, several issues were dis- 90% of PWDs of working age are not employed. PWDs rights cussed including the possibility of a partnership project to education and health are also routinely denied. 90% of chil- on sports. They were very impressed with the discus- dren with disabilities in developing countries do not attend sions and promised to consider partnering with UN- school, says UNESCO. Approximately 20 million women ac- APD. Ole and Lene were also excited when they quire disabilities as a result of complications during or at birth. watched two teams (for males and females) of sitting These statistics highlight the need for all states to design spe- volley ball playing at UNAPD headquarters. cial interventions to combat extreme poverty, HIV/AIDS, illit- Last but not least, the disability fraternity will converge eracy, death (some parents still kill children born with disabili- in Luwero on December 3, 2009, to celebrate the In- ties), gender equality, among PWDs. If this is not done the ternational Day of Persons with Disabilities (PWDs). respective MDGs will never be achieved. This will be a huge UNAPD has been preparing for this day and will ac- shame to Uganda. tively participate in the celebrations. I wish all our UNAPD wishes you good IDD celebrations, a good festive members good celebrations. season and a prosperous New Year 2010. We hope that we shall continue to enjoy the good relationship like we had in I wish you a Mary Christmas and Happy New Year. the year 2009.

UNAPD VISION: A society where people with physical disabilities are accorded rights enjoyed by all citizens WORD FROM THE CHAIRMAN 3 Best wishes for happy IDD celebrations

This issue of at the national celebration venue in would like to hold a General Assem- Update is Luwero. bly when we have at least 20 regis- coming out tered member district associations. close to the Our Accessibility Project is progress- International ing quite well and we would like, all The Labour Market Project has finally Day of Per- being well, to launch the Accessibility taken off. A Project Officer and an sons with Standards before the end of the year. Assistant have been appointed. They Disabilities, We are also working very hard with have approached some employers December 3, support of the Department for Dis- and sensitised them about employ- 2009, which ability of the Ministry of Gender to ment of disabled persons. They have aims to pro- popularise the standards within gov- also advertised calling unemployed ernment and we may be able to get disabled persons with qualifications Hon. James Mwandha mote an un- Chairman UNAPD derstanding them adopted in the Building Control to register with them to enable them of disability Bill. to build a databank which they will use to negotiate with employers. I issues, the rights of persons with dis- The exercise for registering members abilities and gains to be derived from call upon disabled persons with quali- is their respective associations is pro- fications to take advantage of this the integration of persons with dis- gressing very well. So far 17 districts abilities in every aspect of the politi- have registered the minimum number project and register. cal, social, economic and cultural life of 50 members and in many cases I wish to take this opportunity to of their communities. The day pro- beyond that number. Thirteen district thank our partners for the support vides an opportunity to mobilize ac- associations have not yet reached the we are getting in serving our mem- tion to achieve the goal of full and minimum number of 50 and there are bers. All these achievements would equal enjoyment of human rights and others who are registering but have not have been realised without their participation in society by persons not yet informed us of the progress support. with disabilities. they are making. We, in any case, In Uganda, the disability fraternity has used the whole month of Novem- ber to December 3, to raise awareness of the public about disability issues and the need to mobilize action to achieve full inclusion in the Millennium Develop- ment Goals (MDGs) in line with this year’s theme. The coordinators of the activities for the disabil- ity month have done a commendable job, and should be appreciated. UNAPD has played an active part in the pro- gramme as it has always done in the past. Mem- ber associations of UN- Some of UNAPD members, staff and Board, in front of UNPAD’s stall at last year’s IDD cele- APD are called upon to brations in Mbarara District. UNAPD members are urged to come to Luwero in big numbers turn up in big numbers for this year’s celebrations as they have always done.

UNAPD MISSION: To remove barriers in society that prevent people with physical disabilities from enjoying full rights on an equal basis with other citizens. NEWS 4

Send your views, letters or comments to the Editor, UNAPD Update, READERS’ PLATFORM P.O Box 959, Kampala, Email: [email protected] Improving living conditions of Person with Disabilities

BY IRENE NABALAMBA the kind of disability. Their costs are wheel chair is so high that most PWDs met by the Government. PWDs are cannot afford. Other assistive devices given free mobility aids and assistive are also quite expensive. If many able- If a person gave birth to a Child with devices like electric wheel chairs, salary/ bodied men cannot afford to buy a sec- Disability (CWD) in Uganda, they live to pension every month in case they are ond-hand bicycle of 50,000/= in their life regret because the parent/parents will not working, and helped to secure cars time, what about a PWD managing to have to single-handedly meet all the and houses modified to suit their disabil- buy a wheel chair. child’s needs. First, in many cases, the ity. Education and health costs are also Government has to be active in taking father may abandon or disown the child paid by the Government. This is more care of people with disabilities. The pro- in the pretext of ‘we don’t produce dis- or less the same case in a couple of posed monthly pension/allowance to abled children in our family’. The Gov- other countries. PWDs is a good start in the right direc- ernment that is supposed to take care of One can rightly say that you cannot tion, which should be implemented very all its citizens, in most cases, doesn’t compare Uganda to Denmark. Yes, I soon, because it has been long over due. have special interventions for CWDs. agree! However, given the kind of sup- Parents of children with disabilities Many parents of children born or living port other governments give to their should be helped to raise them with with disabilities struggle to bring them PWDs, the Ugandan Government with dignity. In the past, assistive devices up. They incur the cost of their educa- its meager resources, could also do were free in Mulago Hospital, but it is tion (special needs education), health what it can in its own context. For now, no longer the case now. (surgery, physiotherapy, rehabilitation, Uganda can start small by providing a At the start, Government, through its routine medical checkups, disease treat- wheel chair, walking stick, calipers or departments and ministries, should es- ment, mobility appliance/aids their repair crutches to every child with disability tablish the exact number of PWDs in- and maintenance), and transportation by who needs them. Government can also cluding CWDs and their respective public means as many do not own cars. afford to extend free health care and needs. These statistics can help to plan In public transport, a CWD may pay rehabilitation services to every PWD. service delivery and on how best PWDs three times as much as the able-bodied Cars, houses, salaries, etc, may be be- can be helped individually. Furthermore, child. That is for him/herself, helper and yond our Government’s reach right Government should intensify measures for the movement aids like a wheel now. It’s the duty of Government to to prevent new cases of disabilities be- chair. take care of its vulnerable people and to cause the number of PWDs now is al- protect them and their property, but the Parents become helpers/personal assis- ready overwhelming. Government has apparently ‘delegated’ tants to their CWDs because they can- The writer is a PR and Program Development this role to NGOs. Reversals of duties, not afford to hire paid labour. This Officer at CoRSU Rehabilitation Hospital, isn’t it?! means that the economic productivity of the family is limited as most time is It is very common spent taking care of this child mostly by to find PWDs the mothers. If they were working, they crawling on the may have to resign from their jobs to streets of Kampala take care of the child’s numerous and and other districts peculiar needs. because they can- not afford to have The Government does not help out with a wheel chair. most of the above costs. Non- Crawling - for ex- Government Organizations (NGOs) ample crawling have done a great job to help people, into toilets - has children and parents of children with many challenges disabilities but there are still many of and health implica- those who are not reached. No wonder tions. This makes the stigma attached to giving birth to a one really wonder child with a disability, or living with a if the vulnerable disability is high. This is because of the members of soci- immense challenges associated with it. ety are cared for When you look at other countries, for in Uganda. At a example Denmark, the situation is differ- minimum cost of ent. A Person with Disability (PWDs) is 200,000/= – de- UNAPD occasionally gives out mobility devices to her provided with helpers/personal assis- pending on the members. Government has abandoned some of its duties tants up to four or more, depending on type - the cost of a like helping the vulnerable people to NGOs.

UNAPD VISION: A society where people with physical disabilities are accorded rights enjoyed by all citizens PICTORIAL 5

Apollo Mukasa, Programme Officer Accessibility Project was introduced by Beatrice Nassali on October 4. Rights are some of Mukasa’s friends and fellow UNAPD staff, who accompanied him to Beatrice parent’s home in Bukuya, Mityana.

UNAPD’s former staff Mary Nabifo and husband Dickens Miramago. Also see an- Polio survivors pose for a group photo after a training on Post-Polio other photo on Pg1. Syndrome (PPS) and its management.

Happy New Year 2010

UNAPD wishes all her members, partners and stakeholders a Merry Christmas and a prosperous New Year. We are very grateful for all the support and cooperation you have given to us this year and wish for the same in the year 2010.

We also wish to inform you that we shall break-off for the festive season on Friday, December 18, 2009 and re-open on Monday, January 11, 2010. Have a blessed festive season. TYPES OF PHYSICAL DISABILITIES 6

In the last four editions, we looked at Polio, Cerebral Palsy, Club Foot, Birth Defects, Hip Problems, Dwarfism, Spinal Cord types of common physical disabilities. We also looked at Spinal Bifida, Elephantiasis, Muscular Dystrophy and Muscular Atrop tis, a slow disabling condition. Rheumatic Arthritis; a peculiar type of physical disability

WHAT IS RHEUMATIC which makes the joint feel sensitive and ARTHRITIS? painful to touch. If not treated, this may This is a serious disease marked with fever result into deformed joints or disfiguring and pain in muscles and joints that usually of the body. results into disfiguring or deformities of the • Stiffness of the joints (fingers, elbows and hands. Rheumatic Arthritis is an inflamma- knees) when the person affected spends a tion in the body that primarily affects joints. long period of time without stretching or It is sometimes called the disease of the moving the joints. It normally occurs joints. When it is so severe, Rheumatic Ar- upon waking up in the morning, making thritis can deform every joint in the body, joints unable to perform some of the damage muscles, skin and other organs like activities of daily living like brushing, the heart, liver and kidney. dressing etc. The condition affects women more than • The inflammation of the body can cause men. Normally, it begins in early middle age, excessive fatigue and other generalized although sometimes it occurs earlier, like symptoms such as fever or loss of weight. during childhood. Rheumatic Arthritis af- • Though it affects people differently, some fects everyone differently. The nature and people living with Rheumatic Arthritis magnitude of pain may vary each day. Rheu- notice a gradual onset of symptoms with matic Arthritis is not easy to diagnose; it is problems beginning in the fingers, wrists, more often confused with sickle cell disease feet or other small joints. Over the years, especially when it starts during childhood. the condition can progress to larger CAUSES joints such as the hips, elbows or shoul- Although Rheumatic Arthritis attacks and ders. In other people, however, the con- Some of the members of UNAPD Rheumatism Wing Steering Committee: destroys the joints leading to deformities, dition can worsen more quickly. L-R Arthur Jjunju, Immaculate Ssemwogerere, Irene Nabifuge and Godfrey Agono. its causes are not known. It’s thought that • Symptoms can ease or go during which Rheumatic Arthritis is preceded by a viral pain and swelling lessens or even disap- joints become more damaged. infection mainly Parvovirus B. though some pear. This can be as a result of successful • Use of common pain killers, helps to re- times it can be in the family. That is, geneti- medication or simply for no reason what- duce the pain and swelling. They include cal soever. • panadol, ibuprofen, diclofenac, indocid. PREVALENCE • It can also affect the entire body causing These are available but they are not Rheumatic Arthritis is one of the greatest problems that go beyond joint pain. For enough to manage the disease. example, inflammation can affect: the • causes of disability. The pain and disability Other drugs include use of steroids such caused by this disease leads to great suffer- mouth or throat, causing difficulty in as prednisone (has many side effects), CHANGE LIFE STYLE ing. According to international statistics, speaking; the lungs, causing difficulty in antimalarials like hydroxyl chloroquinine, • one out of every 100 people has Rheumatic breathing; or the heart tissue, causing gold salts, methotrexate, sulphasalasine. Arthritis. Out of Uganda’s population of pain in the chest or heart failure. • Regular participation in exercise and about 30 million people, 300,000 are be- NOTE: Every person living with Rheu- sports is becoming ever more popular to lieved to be affected by this condition. 40 matic Arthritis may not experience all reduce pain, relaxation, enjoyment, fitness people living with Rheumatic Arthritis in- these signs, and the severity may vary and general health benefits. This is true cluding 10 new and 30 continuing ones visit from one persons to another. for everyone in the community whether the Rheumatology Clinic in Mulago Hospital TREATMENT or not they have rheumatic arthritis. In every Friday. There is no cure for Rheumatic Arthritis general, exercise like stretching helps to

and the current treatment is intended to increase mobility of joints and muscles, SIGNS AND SYMPTOMS keep the disease under control. Treatment and keep them healthy and in good work- • • Affects joints symmetrically. That is both is designed to reduce pain and inflammation, ing order. Heat or warm baths can offer the right and left side of the body. The maintain the motion and strengthen the short-term, temporary relief of pain and condition can affect different joints most joints, and halt the damage to the bones and stiffness. Heat also helps relax aching often joints in fingers, hands and knees. cartilage. This is important because the muscles. Wrap a piece of cloth soaked in • Pain in the joints or a visible swelling longer the disease exists, the greater the warm water around the affected joints to relieve pain and joint stiffness. However,

UNAPD VISION: A society where people with physical disabilities are accorded rights enjoyed by all citizens TYPES OF PHYSICAL DISABILITIES 7

In the last four editions, we looked at Polio, Cerebral Palsy, Club Foot, Birth Defects, Hip Problems, Dwarfism, Spinal Cord Injury, Spinal Curve and other Back Deformities, Amputees, Leprosy, Burns and Burn Deformities among other types of common physical disabilities. We also looked at Spinal Bifida, Elephantiasis, Muscular Dystrophy and Muscular Atrop hy, Juvenile Arthritis and Born Infection. In this edition, we look at the last physical disability: Rheumatic Arthri- Rheumatic Arthritis; a peculiar type of physical disability

• Keep away from cold conditions to avoid • Absence of medical facilities and trained stiffness of joints. You should also keep medical workers to handle the disease. wearing warm clothes. Cover the legs There is only one Rheumatology Clinic in and hands in a warm cloth. the country at Mulago Hospital. The clinic • Stop smoking. Smoking increases the risk operates once a week on Fridays. The of arthritis. It is, therefore, advisable for clinic and Uganda has only one trained people to keep away from the deadly doctor (Rheumatologist). habit. • Very little is known about Rheumatic • Take all medications prescribed by your Arthritis by health practitioners and peo- doctor. ple living with it themselves. • • Give your doctor a complete medical Drugs to relieve pain are not recognised history including all recent illnesses and by Government as essential drugs, and medical forms. This enables your doctor therefore, are neither subsidised nor to choose a treatment plan which works available in district hospitals. best for you. • Limited opportunities for people living • Find a support group of other people with Rheumatic Arthritis to participate in living with Rheumatic Arthritis. By doing income-generating activities, yet they re- so, you receive emotional support from quire a lot of money for medication. others in a similar situation and can share • Misconceptions. Since the disease pre- and increase your own knowledge-base sents with different signs, it is often con- about coping with Rheumatic Arthritis. fused with many other complications. Sometimes people living with Rheumatic HOW RHEUMATIC ARTHRITIS Some of the members of UNAPD Rheumatism Wing Steering Committee: Arthritis present with acute chest compli- BECOMES A PHYSICAL DISABILITY R Arthur Jjunju, Immaculate Ssemwogerere, Irene Nabifuge and Godfrey Agono. cations, fever, and chest pain, difficult Once the disease sets in, a patient stays in breathing, just like persons living with continuous pain and keeps on drugs in or- don't use heat for longer than 15-20 min- sickle cell. Some people think people liv- der to reduce pain. Nevertheless, the dis- utes each time. Let your skin return to ing with Rheumatic Arthritis are be- ease can cause joint stiffness (unable to normal temperature before using it again. witched and therefore go to traditional fold) in the fingers, legs and hands, hence • Surgery is the final option where a joint is healers. badly da maged and very painful. See deforming the patient. This makes activities of daily living difficult or impossible. This WHERE TO SEEK MEDICAL HELP medical doctor for proper diagnosis, care and treatment. leads to physical disability as it affects the In Uganda, Rheumatic Arthritis is managed Other drugs include use of steroids such patient’s posture and limits their movement. under National Referral and Teaching Hos- CHANGE LIFE STYLE Many people living with Rheumatic Arthritis pital, Mulago, where there is a Rheumatol- antimalarials like hydroxyl chloroquinine, • Counseling. Since the disease is for a life- use walking sticks, clutches or are confined ogy Clinic and a specialized doctor. On the time, people living with Rheumatic Arthri- into wheel chairs. 2nd week of every month, people living with Rheumatic Arthritis are counseled and tis should be constantly counseled about MAJOR CHALLENGES IN UGANDA sports is becoming ever more popular to dealing and living with it without resent- trained in management of the condition. • The drugs dilemma. At about $200 reduce pain, relaxation, enjoyment, fitness ment. Always have a positive attitude. Try About 40 people living with Rheumatic Ar- This is true to live a normal life and participate in (400,000/=) per dose for one month, thritis visit the clinic every Friday. most of the effective drugs are so expen- social activities and relationships. Psycho- The clinic is located on 4 th floor, Medical logical counseling helps people living with sive. There are drugs such as hydroxy- chloroquine, , sulphasalasine, leflunomide Out Patient Department, Mulago. Although Rheumatic Arthritis and their families to and others which cost about 35,000/= there is no cure, great progress has been cope with the disease. made in treating the disease. People who and keep them healthy and in good work- • per dose, per month, but they are not Eat a balanced diet and take a lot of wa- very effective when used alone. would have been bedridden are able to live ter, fruits and vegetables. Eat white meat a more active and fulfilling life if they use the • Dependence on medicine comes with such as chicken and fish. Malnutrition available modern, drugs and attend counsel- side effect such as ulcers, dizziness, low complicates Rheumatic Arthritis symp- ing sessions. With early diagnosis and Wrap a piece of cloth soaked in blood hemoglobin among other complica- toms. Omega 3(fish oil) and egg shell sup- proper treatment, Rheumatic Arthritis can warm water around the affected joints to tions. Consult the doctor in case you get plements are highly recommended. be kept under control. relieve pain and joint stiffness. However, complications. UNAPD MISSION: To remove barriers in society that prevent people with physical disabilities from enjoying full rights on an equal basis with other citizens. ACCESSIBILITY PROJECT 8 UNAPD members start to realise benefits of trust fund through intensified advocacy activities

BY APOLLO MUKASA The Trust Fund has two main objectives: to support the associa- tions to get established based on democratic procedures; and to Through the Capacity Building and Accessibility Project, UNAPD facilitate the associations to carry out advocacy activities to im- members in eight project district have received funds to prove accessibility in the districts. strengthen their leadership and carry out activities aimed at im- The associations started receiving the trust fund in January 2008 proving accessibility in their areas. The project districts include; to implement various activities that have resulted into several Wakiso, Kampala, Hoima, Masindi, Nebbi, Yumbe, Kapchorwa achievements as of October, 2009. Below we look at the and Soroti. Each district has an established UNAPD district asso- achievements categorised under: physical accessibility, democ- ciation and five sub-county associations through which the pro- ratic governance, membership registration, and external support ject is implemented. received by the associations from January 2008.

c governance Democrati ree sub- ciation and th MA DISRCIT he district asso Town 1. 2. HOI cal Disability T ns (Hoima ons with Physi nty associatio b- Hoima Pers e district cou Kigorobya Su OPPDA) is th , Kitoba and Wakiso Action on Association (H asso- Council ave held their Physical Disability five sub-county out of five h (WAPD) is ciation, with Ki- Counties) the name of the distric asso own Council, blies. associatio t s in Hoima T General Assem n. The sub -county asso ciation bya, and Bu- ion tio cia- ambe, Kigoro ship registrat ns are: C toba, Bug Member registered ouncil Ac- unties. rs have been tion on Physical Disa himba sub-co 53 membe bility, Wakiso y -counties. Sub -County Acti l accessibilit om the five sub on on Physical Dis- Physica constructed fr ability, Nan ps have been cilors sana Kansimbe Akagg Eighteen ram members’ PWD coun bers who Perso o t out of the total of 5 mem ns with Physical Disabil in the distric ramps Hoima has a ict level et ity Soci- uary, 2008: 2 cilors at distr y, Sub- County ocacy since Jan ub- e PWD coun Action on adv in Bugambe S ar unties. Physical Disability trict level, 1 the five sub-co and Sub- at dis own Council, and in County Action o in Kigorobya T ort n Physical Disability. County, 2 in Buhimba xternal supp d 16 Sub-County, 5 E so far receive Physical accessibility 3 in Kitoba Town district has of d 5 in Hoima The s and 1 pair Advocacy by th b-County, an airs, 6 tricycle e respective associa- Su wheelch 008. tions in Wa ncil. ince January, 2 kiso District has resulte Cou crutches s into 2 d 3 newly constructed ram 1 ps and PWDs latrine: 7 ramps 3. NEBB in Wakiso I DISTRICT Town Council; 4 ramps in Wakiso Nebb 44 Sub -County; 2 i Association fo ramps are in ramps in (N r Physical Disa Nebbi Town C Town C APD) is the n bled alone, 14 in P ouncil ouncil; 9 ramps in Ma ame of the di ackwach Town Sub -C sulita sociation with strict as- in Panyimur Council, 2 ounty; 1 ramp and 1 five sub- cou Sub- County, 4 PWDs tions nam nty associa- Sub- Cou in Parombo latrine in Kakiri Sub- Coun ely; Nebbi, Pa nty, 8 in Paidh ty. wach to idha and Pack a Town Coun Dem wn councils, a - Democrat cil. ocratic governance Par nd Panyimur a ic Governanc The d ombo sub- cou nd The distri e istrict association and al nties. ct and 3 sub- c l the five Physic tions ounty associa- sub -county associa al Accessibilit (Paidha, Panyi tions have held Neb y hav mur and Paro their General Assem bi District ha e received fund mbo) blies and democ- w s record 72 s to hold thei ratically elec idely spread in ramps eral Assembly r Gen- ted their respective ex different publ before the e ecutives. - This great a ic places. vember, 2009 nd of No- chievement is . a declara attributed to M Membershi tion made by embership r p registration Nebbi T the Mayor o egistration 170 indi own Council f 50 members vidual members have all in 2007, to clo have been re regist been public places w se the project gistered in ered from the five sub -co si hich were not area. unties. ble to PWDs. acces- PWD co This followed a PWDs coun uncilors sibility Auditin n Acces- cilors Waki g exercise in N Nine memb so District and sub -co in Novemb ebbi done ers of the exe unty asso- er, 2007 by U the pro cutives from ciations have 9 mem ported NAPD, sup- ject area are bers who are by the project. since PWD councilo PWD Councilors a carrie The activity w January, 2008. rs t various levels in d out in conju as the project a D nction with N External rea. istrict Union ebbi support in preparation The d External Support International D for the istrict and sub- towards ay of Person hav county associa The associations ability ce s with Dis- e received 72 tions have so far received lebrations. Ser 0,000/=, 6 tr 650,000/= hurried vice providers and 9 wheelc i -cycles and 38 wheelchairs to make their hairs from diff variou from to a places accessib ners since Ja erent part- s partners in Wakiso void closing of le nuary, 2008. District their premises since January, 2008. .

UNAPD VISION: A society where people with physical disabilities are accorded rights enjoyed by all citizens ACCESSIBILITY PROJECT 9 UNAPD members start to realise benefits of trust fund through intensified advocacy activities

4. MASINDI DISTRICT Democratic governance 7. KAMPALA DISTRICT Masindi District Association of Physical Disability The district association and three sub-county Kampala District Association is the district association, under which are five associations (Masindi Town Council, Karujubu of Physically Disabled Per- sub-county associations, including Masindi Town and Nyanghaya sub-counties) have held their sons is the umbrella associa- Council, Karujubu, Nyangahya, Kimengo and General Assemblies. tion, with associations in all

Bwijanga sub-counties. Membership registration five divisions, namely; Kam- Physical Accessibility 72 members have been registered from the five pala Central, Nakawa, Six ramps, 2 toilets and 1 latrine for PWDs have sub-counties. Kawempe, Rubaga and Mak- indye. The associations have been constructed. However, the latrine and toi- PWDs councilors all held their general assem- let were not constructed according to the re- Masindi has 3 members who are PWD council- blies, and therefore, are run quired standard. 3 ramps at the ors at district and in the five project sub- by democratically elected district level, 3 in Masindi Town Council,1 toilet counties. at the district headquarters, 1 toilet in Masindi executives. External support Town Council, and 1 latrine in Nyangahya Sub- Masindi associations have received 300,000/= County. The district has registered and 9 wheelchairs from external sources since 132 members. However, it January, 2008. has not yet carried out advo- cacy activities on accessibil- county asso ciations have held 5.KA their Ge ity, because none of the asso- PCHORWA D neral Assemblies ISTRICT curren and ciations has received trust Kapchorwa Distr tly run on dem ict Association p ocratic funds for this activity. of Physical Dis rinciples. ability (KADAPD) RICT is at district Member DIST level, with five su ship registra- ROTI ysical st- county asso b - tion 8. SO on Ph l in Ea ciations. Their e Action ict leve forts h f- T istrict t distr county ave resulted int he district asso roti D D) is a e sub- struc o con- h ciation So ODAP a of fiv ttira tion of 9 new ra as submitted 50 fu ility (S mbrell nty, A Ja mps since lly reg- Disab d an u ub -Cou - nuary, 2008. The istered membe nda an oroti S da Sub project is rs from the ern Uga at is, S y, Kamu implemented in five project su ons. Th Count ty. Kapchorwa b -counties to ssociati ret Sub - -Coun Town Council, UNAPD Hea a ty, Asu ion Sub Tegeres Sub- dquarters. -Coun rn Divis e been County, Kase P Sub Weste ps hav rem Sub- County WD councilors ty and 6 ram em- Kaproron , Coun ility. ies by m Sub- County, a There are 9 m cessib activit ict Cheem nd embers who are al ac vocacy Distr a Sub -County. PWD counc Physic t of ad at the ilors at the distric ted ou 1 ramp in So- Physical ac and in t nstruc , 2008. ramps cessibility the five sub -countie co anuary e), 2 ty, 2 ram s. since J ’s Offic b -Coun ps in Kapchorwa External su bers (CAO ttira Su Cou Town pport arters p in A ncil, 3 ramps in Te The distr eadqu , 1 ram ty. -C geres Sub ict and sub -county H ounty -Coun ounty, 1 ramp in K socia as- Sub -C ret Sub aserem Sub tions have so far roti in Asu -County, and 3 1 received ramps e sub - ramps in Kapro- 4 wheelchairs, 1 and 2 rnanc d two ron Sub -Cou 5 pairs of c gove tion an ion nty. crutches and 6 ocrati associa ty Act walking sticks in Dem district ub -coun y Democratic go form of donat brella oroti S -Count vernance ions from various The um ions (S tira Sub The district and partners sinc ssociat nd At e held all the five sub - e January, 2008. ounty a ability a lity) hav c ical Dis l Disabi on Phys Physica ation of es. Associ ssembli 6. YUMBE Democratic governance eneral A their G tration rom the Yumbe District Association of Physi- The district and four sub-county ip regis tered f bersh en regis cally Handicapped (YUDAPH) is the associations have held their General Mem have be embers umbrella association in the district, Assemblies, except Kuru sub-county. 72 m s. -countie l- with Yumbe Town Council, APO, Membership registration ive sub counci f ilors PWD Odravu, Kuru and Midigo sub-county 84 members from the project area counc ho are trict. PWD mbers w t the dis associations under it. have been registered. e 3 me s and a here ar -countie Physical Accessibility T five sub e PWD councilors in the ons hav 10 new ramps have been con- ors rt sociati Yumbe District has 5 UNAPD mem- l suppo unty as ifferent structed in Yumbe in the various xterna sub -co from d bers, who are PWD Councilors E rict and elchairs . project sub-counties. 5 in Yumbe he dist 7 whe , 2008 since January, 2008. T ived 15 January Town Council, 2 in Midigo, 1 in far rece ns since External support so donatio Kuru, 1 in APO and 1 ramp in ers as The district has received 4 wheel- partn Odravu sub-counties. chairs from different partners since

January, 2008.

UNAPD MISSION: To remove barriers in society that prevent people with physical disabilities from enjoying full rights on an equal basis with other citizens. DRF PROJECT 10 How UNAPD is implementing the Convention

On October 29, 2009, the National APD has sensitized local government and members. Council for Disability organised a stake- services providers in Rakai and Ntungamo Article 25: Health holders’ meeting, where representatives districts about the Convention. UNAPD UNAPD has participated in many activi- of Government ministries and Disabled members are being supported with a ties to promote immunization against People’s Organisations (DPOs) attended, trust fund to independently implement polio to prevent new polio infections. We and shared information about how each is advocacy activities. also help Persons with Cerebral Palsy and implementing the UN Convention on the Article 9: Accessibility Acquired Brain Injury to live a better life Rights of Persons with Disabilities. Below UNAPD took the lead in the develop- through counseling, physiotherapy ser- is an excerpt of what Hamad Lubwama ment of Accessibility Standards that guide vices, provision of medicine (in conjunc- presented on behalf of UNAPD, highlight- stakeholders in the construction industry, tion with Butabika Hospital) and linking ing what UNAPD is doing in regard to to construct accessible facilities. The people with these conditions to other specific key articles in the Convention. document, developed together with line hospitals and rehabilitation centers. UN- ministries, stakeholders and partners, will APD has also led to the revival of the Article 6: Women with disabilities be launched this year. UNAPD is working Rheumatology Clinic in Mulago Hospital, UNAPD has supported the development with relevant Government bodies to where Persons with Rheumatic Arthritis of a Youth Wing (comprising of youth with physical disabilities) and Women’s make sure that the Accessibility Standards are attended to. Concept papers to Par- Wing (comprising of women with physical are annexed to the Building Control Bill. liament and Ministry of Health have been disabilities) within the organization. The UNAPD is also implementing a project written, petitioning for availability of aimed at promoting accessibility in eight medicines to help in the management of Wings’ members have been trained into ; namely Kampala, these conditions in Health Center IIIs and leadership, peer counseling, HIV/AIDS, Wakiso, Hoima, Masindi, Soroti, Kap- communication skills, advocacy skills, etc. IVs. This is aimed at building their capacity in chorwa. Nebbi and Yumbe. Article 27: Work and employment self-governance, advocating for their con- Through the Labour Market Project (has Article 19:Living independently and cerns, actively participate in UNAPD ac- just started) UNAPD seeks to increase tivities, and to take on leadership posi- being included in the community the employability of persons with disabili- tions within UNAPD and in their locali- Article 19, Article 20 (personal mobility), ties and to make sure that they are gain- Article 26 (habilitation and rehabilitation) fully employed. A Labour Market Desk ties. and Article 9 (Accessibility) are imple- Article 7: Children with disabilities has been established, where PWDs seek- mented in unison by UNAPD. The organi- ing employment register, and where em- Early this year, UNAPD carried out an zation advocates for provision of commu- ployers will come for potential workers. accessibility survey in nine schools in nity-based services and provision of qual- Wakiso District, to assess how far ity mobility devices at an affordable cost Conclusion: CWDs can access school facilities. One to PWDs. We also advocate for an envi- One of the main challenge faced so far out of the nine schools was found to be ronment that allows persons with physi- during the implementation of the Con- fairly accessible. The findings of the sur- cal disabilities to attain and maintain maxi- vention is that service providers and local vey were shared with the district leader- mum independence, full physical, mental, governments always complain of not hav- ship that committed itself to implement social and vocational ability, and full inclu- ing funds to put in place the need of PWDs. Efforts have to be made to draw the recommendations of the study. UN- sion and participation in all aspects of life. their attention to the CRPD’s notion of APD strives to make sure that Children With the availability of assistive devices, Reasonable Accommodation, Progressive with Physical Disabilities access all ser- an accessible physical environment, acces- Realisation and the strategies for effective vices like other children. sible services, and rehabilitation services, use of limited resources (target low-cost Article 8: Awareness-raising persons with physical disabilities are able programmes, and to target people in UNAPD is raising awareness about dis- to live independently and participate in all ability and the Convention. Through the society’s activities. UNAPD secures from most marginalized situations. Disability Rights Awareness Project, UN- some partners, assistive devices for some

Uganda National Action on Physical Disability (UNAPD) Employment of Persons with Disability Are you a qualified and committed Persons with Disability (PWD) seeking employment? UNAPD is implementing a Labour Market Project, through which PWDs with various qualifications are linked to potential employers. On every Thursday of the week (9am-3pm), project officers are available to provide infor- mation on employment opportunities and provide newspapers for employment news. They also provide PWDs with job-searching skills, to facilitate entry of PWDs into the labour force. Please bring your CV to UNAPD, Kanyanya, Gayaza Road, P.O Box 959, Kampala. PWDs have the ability to work like any other person.

Contact UNAPD Tel: 0414567541, Email: unapd@utlonline, or Project Officer Tel. 0779184472, [email protected]

UNAPD VISION: A society where people with physical disabilities are accorded rights enjoyed by all citizens UBISP PROJECT 11 BY ALICE KUTYAMUKAMA The misery of a disabled I am on my routine visits of children with Cerebral Palsy child who is tied on rope and Acquired Brain Injury, to offer coun- hardly sit, and on seeing us, he struggles from Cerebral Palsy (CP), a disabling seling and guidance to pull himself over for help. condition that is acquired before or dur- to parents of chil- ing birth. Children suffering from CP are The neighbuor lifts him up and we go dren suffering from normally unable to control their neck, outside the house. Wamono sees a dif- these conditions. I with weak arms and legs. They can’t do ferent world, with a sun and the feel of also perform exer- things like sitting or crawling like their the warmth it generates that he has ap- Alice K. cises to the children fellow children of the same age (they Ass. P.O. UBISP parently not experienced for a long time. and on-spot training ‘take long’ to grow). They also normally Out of excitement, he struggles to speak of parents about how to take good care suffer from epileptic fits (ensimbu). but he can not. He tries to stand up, but of these children for them to grow into he cannot. However, the first born of The most common causes of CP are: productive citizens. I am in company of the family can’t afford to keep off the pregnant mothers suffering from diseases Faizo Njuki, a community volunteer in smile! like malaria; poor feeding during preg- Wabigalo Parish, Church Zone, Mak- nancy; domestic violence; poor feeding indye Division, and Godfrey Basoita, Pro- We send a little girl to call us Wamono and poor antenatal care, poor use of gramme Officer, Uganda Brain Injury Senior for a talk, but she quickly returns medicines during pregnancy; delay in Support Project (UBISP). with a message: “He has told me to tell labour, among others. you that he is not there?” He was at a There is total silence at Joshua Wa- certain ‘Malwa’ (a local brew) joint taking In Uganda, there are many children suf- mono’s place. His parents’ house is alcohol at 10am. fering from CP. However, when they are closed. We call out at the neighbours, to taken good care of, they can grow very ask for the whereabouts of the family. Wamono (father) separated with his wife well, get educated and become produc- “The wife went for a funeral and the three months back when she was going tive citizens who can live an independent husband is nearby,” a lady responds. to the village for a funeral. “He (father) life. “Where is Wamono,” we ask, before told his wife to take both children but she opens his parents’ house. she refused. He instructed her not to These children too need love, care, re- I start panting at the sight of Wamono. come back if she didn’t go with the two spect, understanding, good shelter; they “I am I dreaming, or I have become visu- children and she refused,” the neighbuor need all the essential human needs just ally impaired?” I ask my self in a wild rush says. By the time we visited Wanono, like any other person. They should be of questions, at seeing a very handsome her mother had not returned more than left to play with other children. boy tied on a rope like a goat. I turn to three months after she went. Wamono’s Life is so sweet! Therefore, if saved, it my colleague and we stare at each other follower is three years old but she can must be lived. in disbelief. A moment of silence follows, do activities like as if in memory of a friend who has walking, talking, Update about UBISP activities passed on. among others, that • Health and the Ministry of Wamono cannot Community-Based Rehabili- The six-year child is severely malnour- Education and Sports, high- do. tation and field activities ished and looks like a one-year old. He have been going on in the lighting the special needs of can not talk. He can not stand. He can Wamono suffers entire project area. Home people with Cerebral Palsy visits give us an opportunity and Acquired Brain Injury. to interact with the family • Preparing to participate in members. the cerebrations to mark • Psychiatric outreach clinics the International Day of have also been on going Persons with Disabilities. where clients receive drugs. • Planning to have a meeting • Follow up on the registra- to share information that tion of the six Self-Help was obtained from our Groups as Community- CBR visits in Kayunga, Based Organisations in Busia and Tororo Districts. their respective divisions of • Planning to have a radio Kampala. talk show to sensitize the • We are organising to pre- general public about People sent a concept paper to with Cerebral Palsy and Parliament, Ministry of Acquired Brain Injury.

Children who suffered from CP but are happily living

UNAPD MISSION: To remove barriers in society that prevent people with physical disabilities from enjoying full rights on an equal basis with other citizens. WINGS PROJECT 1212 UNAPD women steer national volleyball UNAPD Women trained in

BY OPOT SCHOLAR making sweaters and beads

In one of the editions of UNAPD Update this year, Irene Nabalamba, castigated government and sports organisations for not considering participation of PWDs in sports. She said PWDs love sports and can actively participate in it, and therefore, thrill spectators on seeing the same sport played in a different way. Nabalamba’s article apparently caught the at- tention of the National Council for Disability, who through the Uganda Disability Sport Asso- ciation, invited UNAPD to start participating in sports activities. As I write, about 20 women from UNAPD, including me formed the national women sit- ting volleyball team for PWDs, now undergo- Members of UNAPD Women ing training in Lugogo, or sometimes at UN- Wings training into making beads APD headquarters in Kanyanya. In August this year, Uganda Disabled Sitting Volleyball Association, had approached me to BY HARRIET ZANSANZE join the organization, that for long lacked women with disabilities. Their aims was to start the women team. I welcomed the idea UNAPD Women Wing have been trained in making sweaters and beads, that was long over due. using the Wings Project Trust Fund. Ten participants from five divisions of Kampala district attended the training on 26 October—November 1, 2009. One of UNAPD’s staff, Irene Namigayo, was Five women trained in making sweaters and other five trained in making selected and trained into coaching children beads. The trainers were Lilian Walugembe, a member of the Steering with disabilities in sports. She is now a qualified Committee of the Women Wing, and Aidah Zawedde, a member of the trainer, doing her stint at Agakhan play ground, Polio Survivors’ Working Group. The women appreciated the training and with a good number of children. pledged to start earning money by making and selling sweaters and the The PWDs quest for participation is sports has beads. However, the trainees in sweater making said they needed more also received a boost from Ole and Lenes from time to learn how to make sweaters for babies. Vincent Naliima, a Board Member of UNAPD closed the training. the Danish Sports Organisation for the Dis- abled, who visited UNAPD this month, to POLIO SURVIVORS FORM GROUPS discuss involvement of PWDs in sports activi- The polio survivors have formed groups in each of the five division of Kam- ties. They also discussed the possibility of pala through which they will create awareness about Post-Polio Syndrome starting a sports project in Uganda in partner- and advocate for their rights and needs. Each group’s executive comprises ship with UNAPD. five committee members. The groups were formed following the training The visitors were convinced that the women of the members into leadership and advocacy skills on 23 October, 2009. and youth wings of UNAPD are determined to They were also trained in managing Post-Polio Syndrome (PPS), a condition make Uganda a country in which PWDs are that manifests itself in renewed weakness of muscles several years after suffering from polio. seen as great sport ladies and gents. Ole Ansbjerg and Lene Van der Keur were PLANNED ACTIVITIES impressed when they watched the women and • The Rheumatism Wing is planning to raise awareness about Rheumatic men sitting volleyball team playing at UNAPD. Arthritis, (a serious disease of joints and muscles), in various churches in November and December 2009. A general meeting for the Wing is also The men’s team that has been in the game for planned for December 2009, to share experience and progress. the last five years have participated in various • competitions with niebouring countries of The Women Wing are planning to carry out advocacy meetings in schools to sensitise authorities and students about the rights of children Rwanda, Congo and Kenya, among others. with disabilities. We are also actively participating in games like • The Youth with Physical Disability in Iganga are planning to carry out table tennis and cricket, as we look out to HIV/AIDS sensitisation among the youth to create awareness about the other games that we can participate in. scourge.

UNAPD, Namasole Road, Kikuubo Zone, Gayaza Road Plot 459, Kanyanya, P.O.Box 959, Kampala, Uganda UNAPD VISION: Tel:A society 041567541, where 0414-566056 people ORwith Email: physical unapd@utlo disabilitiesnline.co.ug are . accordedWebsite:www.unapd.org rights enjoyed by all citizens