What would be the Next Step?

Action Research

“Discovering Deafblindness within the wider Rwanda Disability Context”

0ctober - November 2019

DeafReach is a UK registered charity No.262962, founded in 1971 to assist deaf and deafblind
children and adults in the UK. In 2016 it added the support of overseas initiatives via partners in
Rwanda, Uganda, Congo and Burundi. The trustees relevant to this Action Research are:

Rod Clark OBE: Chairman, who has spent almost 50 years in the field of sensory impairment, and
who was founder and CEO of the deafblind charities, SENSE & SENSE International.

Isobel Blakeley: Retired teacher of the deaf, spent 18 months working in Rwanda with VSO and is
our Rwanda lead.

Anne Ryan: Treasurer of Signhealth UK for over 20 years, is our Ugandan lead.

Chris Kubwimana: A deaf Burundian, and a Social Worker in the London Borough of Croydon is
Burundi Lead.

Teresa Quail: Teacher of the Deaf and an Educational Audiologist, is our Audiology Lead.

Contact:

DeafReach: 31 Sutton Road, Shrewsbury, Shropshire SY2 6DL

Chairman: Mr Rod Clark OBE

Telephone: 01743 358998

Email: info@deafreach.org

Website: www.deafreach.org
 Table of Contents

Section Page No

Acknowledgements: Isobel Blakeley 4

Foreword: Rod Clark 5
Glossary of Abbreviations 6
Purpose, Methodology and Outcome 7
Definition and Implications of Deafblindness 8
Rwanda Country background 9
Map of Rwanda 10
Geographical reach of research: Map 1 11
Geographical reach of research: Map 2 12
1. Seeing Hands, Kigali 13 - 14
2. Home de la Vierge des Pauvres Gatagara, Rwamagana 15 - 16
3. Amizero Centre, Kigali 17
4. Groupe Scolaire Gahini, Kayonza 18
5. Home de la Vierge de Pauvres Gatagara, Nyanza 19
6. St Gabriel Deaf School, Butare 20
7. Kibeho School for the Blind, Kibeho 21
8. Masaka Resource Centre for the Blind (MRCB), Kigali 22
9. Blessing School for the Visually Impaired, Musanze 23
10. Musanze District Office/Sada, Deafblind Woman, Musanze 24
11. Gakenke District Office, Gakenke 25
12. Burera District Office, Burera 26
13. Ubumwe Community Centre, Rubavu 27
14. Komera Centre, Rustiro 28
15. Rwanda Union of the Blind (RUB) 29
16. Groupe Scolaire Rosa Mystica, Kamonyi 30
17.Agarwal Eye Hospital, Kigali 30
18.National Union of Disability Organisations in Rwanda (NUDOR) 31
19.Swedish Federation of the Deafblind (FSDB), Sweden 32
20.Blind & Deafblind Association, Rusizi 33
21.Rwanda Aid 34
22.Groupe Scolaire Filipo Smaldone, Nyamirambo, Kigali 35
Conclusions and Recommendations 36

Appendix 1: Research Questions 37

 Acknowledgements: Isobel Blakeley

Ms Beth Gatonye Founder and CEO, Seeing Hands, Kigali, Rwanda

Brother Jules Headmaster, HVP Gatagara, Rwamagana, Rwanda
Rev. Eraste Ndakekwa Centre Director, Amizero Centre, Gikondo Parish, Kigali, Rwanda
Mr Rene Dean of Studies, Groupe Scolaire Gahini, Kayonza
Mr Gatari Jean Baptiste Headmaster HVP Gatagara, Nyanza
Brother Ntamagiro Bosco Headmaster, St Gabriels Deaf School, Butare
Brother Peter Bizoza Audiologist & Dean of Discipline, St Gabriels Deaf School, Butare
Sister Patricia Head Teacher, Kibeho School for the Blind, Kibeho
Jean Marie Vianey Director, Masaka Resource Centre for the Blind, Kigali
Jean Bosco Ntakirutimana Founder/Director, Blessing School for the Visually Impaired, Musanze
Sada and Family Mother of deafblind daughter, Sada.
Mr Patrick Muvunyi Disability Mainstreaming Officer, Gakenke District
Ndayambaje Jean Bosco NCPD District Coordinator, Burrere District
Kagaba Jean Baptiste Advisor to the Mayor, Burera District
Mr Justin Nshimiyimana Programmes Coordinator, Ubumwe Community Centre, Rubavu
Mr Elias Serugo Coordinator, Komera Centre, Rustiro
Donatilla Kanimba Executive Director, Rwanda Union of the Blind (RUB), Kigali
Sister Cresence Head Teacher, Groupe Scolaire Rosa Mystica, Kamonyi
Dr John Nkurikiye Eye Surgeon, Agarwal Eye Hospital, Kigali
Emile Vuningabo Livelihood Programme Coordinator, NUDOR, Kigali
Faustin Renzaho Fundraising & Networking Manager, NUDOR, Kigali
SophieToomvali-Peterson Project Manager, Swedish Federation of the Deafblind (FSDB)
Klas Nelfelt Vice President, World Deafblind Federation, Sweden
G. Nyirarandayambaje Blind and Deafblind Association, Rusizi
Sister Jeanne Groupe Scolaire Filipo Smaldone, Nyamirambo, Kigali
Janyis Watson Rwanda Aid, Kamembe
Alice Nabbanja Consultant Trainer of tactile sign language at Masaka Centre

During my time in Rwanda as a VSO volunteer from 2014-15 working in two deaf schools, I was aware of other
provisions in Rwanda for deaf children and organised through the INGOs VSO and Chance for Childhood opportunities
for them to meet for sports and educational discussions.

Through those encounters I became aware that there was no such provision for Deafblind children. Discussing this back
in the UK with the Chair of DeafReach, this became a focus of concern for us both, leading to this action research
initiative with a host of concerned Rwandans. With heartfelt thanks we acknowledge this extensive list of individuals
and organisations who shared their time to make this research possible. We would also record our thanks to Eric Ngabo,
DeafReach Trustee Teresa Quail and International Director Mr Howard for the research and writing of this report.

As we are at the beginning of a new decade, we trust that this too will be the start of a new initiative, to bring hope and
fulfilment to those individuals and their families in Rwanda, who due to a dual sensory loss, find themselves in
extremely difficult and challenging circumstances. A new Decade, a new Initiative, a new Hope.

Isobel Blakeley, DeafReach Trustee and Rwanda Lead

4
 Forward: Rod Clark

Most of my career has been spent in developing services for deafblind children and adults both in
the UK and overseas as Chief Executive of Sense, the National Deafblind and Rubella Association.
In my experience, many educational and rehabilitative services for this group of people have come
about when an existing provider has become aware of a number of individuals needing a service,
and has proceeded to establish one, in the sure knowledge (but without formal data) that there are
many others nationally who are in similar need. Some schools and training centres often begin life
with 2 or 3 pupils and trainees, but knowing that, once word has gone around, or an outreach
research programme has been put in place, the unit will undoubtedly grow.
DeafReach’s trustees have been involved in deaf and deafblind services in East Africa for many
years. Our work in Rwanda came into being as a result of a Strategic Planning exercise for
Signhealth Uganda, in which Rwanda was identified as the neighbouring country most in need of
support. As a result, we are supporting two deaf schools in the north and West of the country:
Umutara and Nyabihu. Our major project at this time is the construction of a Vocational Training
Centre (TVET in Rwandan terminology) at Umutara Deaf School.
As a result of these developments, and also through our association with Signhealth Uganda, we
became aware of 2 projects to establish deafblind school units in DRC, one in Goma and one in
Aru. Our volunteer consultant architect, Stephen Waldron, is shortly visiting Goma to help our
partner, Rev Kamonyo Bosanyi and his NGO, CENYESED, with a design for a new unit.
These developments then led us to think about the situation in Rwanda. We knew that some work
had been done by the Rwandan Union of the Blind, involving support from CBM, FSDB (the
Swedish Deafblind Association) and Sense International Uganda. We decided to seek the fullest
picture through a five-week action research tour of the country, interviewing all the educational
establishments, NGOs and Government departments serving disabled children and adults.
This report represents the outcome of that action research tour. The next step is to determine how
best to establish a first service, in the knowledge that, as with every other country in the world,
there are children and adults out there desperate for intervention by skilled teachers and trainers.

Mr Rod Clark, Chair, DeafReach, UK

5
 Glossary of Abbreviations

CBR Community Based Rehabilitation

CP Cerebral Palsy
CVI Cortical Vision Impairment
DO District Office
DR DeafReach
DRC Democratic Republic of Congo
DMO Disability Mainstreaming Office
FBO Faith-Based Organisation
GDP Gross Domestic Product
IEP Individual Education Plan
INGO International Non-Governmental Organisation
NCPD National Council for People with Disabilities
NGO Non-Governmental Organisation
NUDOR National Union of disabled people's Organisations Rwanda
RFS Rwandan Francs
RNUD Rwanda National Union of the Deaf
ROPDB Rwanda Organisation of Deafblind People
RSL Rwandan Sign Language
RTSL Rwanda Tactile Sign Language
RUB Rwanda Union of the Blind
SFDB Swedish Federation of the Deafblind
TVET Technical, Vocational, Education & Training
UEB Unified English Braille
WDA Workforce Development Authority
WFDB World Federation of the Deafblind
WHO World Health Organisation

6
 Purpose, Methodology & Outcome

Purpose

Given the paucity of information on deafblindess in Rwanda, the primary purpose of this research
was to secure a broad picture of the prevalence of deafblindness in Rwanda, the circumstances of
persons with deafblindness, official policies towards them and the services available.

Throughout the research, the question was asked, “If a mother brought a deafblind child to you
seeking help, “What would be the Next Step?”

Additional benefits: Discovering the level of audiological provision in Rwanda for possible future
initiatives and securing a wide picture of disability within Rwanda to aid all future DeafReach
partnerships and initiatives within Rwanda.

Methodology

In the absence of hard quantitative data and knowledge and the five weeks available, to travel
within as many of the geographical regions of Rwanda as possible to conduct interviews with key
personnel within as many relevant Government Offices, I/NGOs, Deaf Schools, Blind Schools,
Voluntary Organisations, Federations and Civil Society Organisations as could be accessed.

Through this investigation of the wide disability sector in Rwanda (while focussing strongly on deaf
and blind sectors), it was envisaged that each interview would provide additional avenues of
research to follow up, utilising this flexibility to seek the widest overall picture possible.

Outcome

Achieve a baseline analysis of deafblindness in Rwanda for consideration of practical response by

DeafReach, its partners and friends in the development world.

Note on Terminology

Countries, organisations and individuals all use a wide range of words when discussing “disability”.
This report takes no view on whether certain terminology is preferable or more helpful, but simply
reflects the discussions as they occurred.

7
 Definition and Implications of Deafblindness

Nordic Definition of Deafblindness

“Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the
impaired senses to compensate for each other. Thus, deafblindness is a distinct disability.”

Deafblindness and its implications

“Deafblindness is often underestimated and misunderstood, contributing significantly to the many

barriers faced by persons with deafblindness. Some persons with deafblindness are completely deaf
and blind, but many have a little sight and/or hearing they can use. From the Nordic definition the
WFDB defines deafblindness as a distinct disability arising from a dual sensory impairment of a
severity that makes it hard for the impaired senses to compensate for each other.

In interaction with barriers in the environment, it affects social life, communication, access to
information, orientation and mobility. Enabling inclusion and participation requires accessibility
measures and access to specific support services....Deafblindness is more prevalent among older age
groups. However, among children and young adults, deafblindness presents additional implications,
impacting on learning and gaining employment.” (WFDP 2018)

8
 Rwanda Country Background

Geography

Often referred to as “The land of a thousand hills”, Rwanda is a green and undulating landscape of
hills and plantations ranging from 1,000 to 4,500m above sea level. Situated in the heart of Central
and East Africa, the country is 5 miles south of the equator and covers a total area of 25,313 Sq Km.
Bordered by Uganda to the north, Tanzania to the east, Burundi to the south and the Democratic
Republic of Congo (DRC) to the west, it is landlocked with the exception of the great body of water
of Lake Kiev which forms part of its western border.

Landscape and wildlife

Known for its great diversity of landscapes, Rwanda has five volcanoes, twenty-three lakes and
numerous rivers, some claimed to form the source of the River Nile. Its vegetation ranges from
dense equatorial forest in the northwest, through to the Rugezi Wetlands and on to the tropical
savannah of the east. The country is home to one third of the world's remaining mountain gorillas,
has one third of Africa's bird species and has forty percent of the large mammals species of Africa,
with the great animals of the wild protected and able to roam free within the vast national parks.

Structure and politics

For Administrative purposes the country is divided into four Provinces plus the Capital of Kigali,
with a further sub-division of 30 Districts. The political system is Republican, with a Presidential
and multiparty system. The incumbent President, Paul Kagame, was elected with a landslide
majority in 2003 to a seven-year term, during which the country is credited with making strong
socio-economic and political progress, promoting peace, stability and social cohesion in contrast to
past divisive politics. In 2010 the President was re-elected to a second term on a platform of
economic development.

Population

The most recent statistics put Rwanda's population at around 11.5 million. There is a youth bias
within the population and the political focus of Rwanda, with the age group 0-35 accounting for
78.7% of the population in the 2012 Population Census. Women make up a slightly higher
proportion of the population than men, while unemployment rates are higher among young women,
particularly amongst those young women living in the urban areas.

Economics

GDP growth in 2014 was calculated at a substantial 7%, with GDP per capita of $718. Agriculture
accounts for 33% of this GDP, with Industry at 14% and services at 47%. A modest inflation rate of
2.4% was recorded in the same year, with a credit rating of B+ described as positive and stable.

Agriculture and Industry

The principal food crops are bananas, beans, cassava, groundnuts, maize, millet, potatoes, rice,
sorghum and wheat. Industry is focussed on cement, agricultural products, small-scale beverages,
soap, shoes, plastic goods, textiles and cigarettes.
9
Map of Rwanda

10
 Geographical Reach of the Research: Map 1

Index of place names

A: Seeing Hands, Kigali

B: HVP Gatagara Rwamagana, Rwamagana
C: Amizero Centre,Kigali
C: Groupe Scolaire Filipo Smaldone, Kigali
D: G.S Gahini,Kayonza
E: HVP Gatagara Nyanza,Nyanza
F: St Gabriel’s Deaf School, Huye
G: Kibeho School for the Blind, Kibeho
H: Gakenke District office, Gakenke
I: Sada’s home, Musanze
J: Masaka resources centre for the Blind, Kigali

11
 Geographical Reach of the Research: Map 2

Index of place names

A: Burera District Office, Burera
B: Ubumwe Community Centre, Rubavu
C: Komera Centre, Rutsiro
D: Agarwal’s eye hospital, Kigali
E: Rwanda Union of the Blind, Kigali
F: G.S Rosa Mystica, Kamonyi
G: NUDOR, Kigali
H: SFDB group, Kigali
I: DB Rusizi association and Rwanda Aid, Rusizi
J: Blessing school for the Visually impaired, Musanze

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 1. Seeing Hands, Kigali

Founder and Director: Beth Gatonye

Seeing Hands is a Rwanda registered NGO based in Kigali that was set up to respond to the very
high level of unemployment amongst people living with disabilities. It was begun in 2017 by Beth
Gatonye, a professional massage therapist who had previously worked at a centre in Kigali for
children with disabilities.

The organisation provides practical training in professional massage therapy that enables people
with disabilities, especially blind people, to achieve a profession, leading to independence and
empowerment and the changing of stigma and assumptions about disability and blindness within
their communities. Marriage training is also provided, together with self awareness courses that
reduce the tendency to self-harm, typically cutting and burning. The long-term vision is to scale-up
the organisation to be the best in its sector, taken over and run by people with disabilities.

We were introduced to the team of six blind students, and through Beth had an extended discussion
with them. One of these was a single mother who had graduated from secondary school, who
described her struggles to pay the rent through sewing work. She confirmed that achieving work
following graduation was a huge challenge, as it is for all Rwandan people with disabilities. Prior to
the founding of Seeing Hands in 2017, no blind people in Rwanda worked.

There are boarding schools in where they can receive an education, while this is restricted to those
campuses due to limited bus accessibility. Just two Universities in Rwanda are able to provide for
their access needs. Vision impaired and blind people are officially designated as having priority
within hospitals while they often still need to be accompanied by a sighted person.

Where infant screening for blindness and deafness takes place, doctors generally do not share their
findings with the families while midwives delivering these babies do not seek to explain anything
about this disability. During her time of volunteering at a clinic for new mothers, Beth had not
noticed any cases of glue ear or discharge, nor of craniofacial features such as cleft palate, missing
pinna or ear malformations. She knew of three families in which all the children were blind, while
unable to confirm if deafness was present that might raise the question of Usher Syndrome.

When the team were asked to list the key challenges they would like sighted people to understand,
all shared the desire for them to change their minds about blind people and understand they were
able to achieve employment. Families and communities sought to hide them, viewing blindness
with shame and embarrassment and as a curse brought on the family. There is no availability of
training to change this attitude nor any white cane training. It was almost impossible for blind
people to meet together, and they spent the majority of their time alone. They cannot rent a property,
usually requiring help to do this for them. They sought a future run by them

Deafblindness: Beth had heard of training in tactile sign language via the Rwanda National Union
of the Deaf (RNUD) but could not provide any details. She was also aware of deafblind babies who
were completely deaf and blind and with profound and multiple disabilities from her previous
volunteer work with a clinic for new mothers. Unable to recall their ages or sex, she confirmed that
they were all referred onwards to another centre called Rosa Mystica. She also knew a mother with
a deafblind child called Maman Subira who might be able to lead us to these children. We
subsequently visited this centre but could not find anyone who knew these five children.

13
One of the team called Ernest mentioned that during his time at HVP Gatagara School for the Blind
in Rwamagana (see later) many years ago he had become aware due to the need to stand closely and
address them loudly of four blind students aged 8, 14, 16 and 20 that might have a level of hearing
loss, but was not aware of their whereabouts or circumstances.

Team members described the communities and families of deafblind people as not very supportive,
with fathers tending to leave. All of the mothers in the Team were single, with none in work or with
the opportunity to achieve this or any form of independence or empowerment.

Beth noted that some deafblind people had presented with unusual craniofacial features. Deafblind
children or adults who were “discovered” were generally sent to the local hospital, while really
needing access to a major hospital in Kigali where audiological testing was available, but which
they could not in any case afford. She felt the most important initiative for deafblind people would
be availability of training and then employment, suggesting that it should be written into law for
employers to ensure that a minimum of 1% of their staff were deafblind.

Beth’s initiative, passion and vision of practical empowerment through employment was very
impressive, developing this organisation single-handedly with her own time and money. Several of
the training team articulated these same hopes and dreams very effectively. She appeared to be
marketing this service very well within the community and to other I/NGO groups.

14
 2. Home de la Vierge des Puavres (HVP) Gatagara, Rwamagana

Head Teacher: Brother Jules

HVP Gatagara was founded by a Belgian Father, Joseph Fraipont Ndagijimana, in 1962 and today it
is one of the biggest, if not the biggest, charity working in the disability education sector in
Rwanda. It operates four inclusive and special schools and two orthopeadic and rehabilitation
schools across Rwanda. In addition to this special school for the blind at Rwamagana, they have a
special school for intellectually challenged children at Gikondo, an inclusive school for deaf and
physically disabled and non-disabled students at Nyanza and an inclusive school for deaf and
physically disabled and non-disabled students at Butare.

This school has 161 students between the ages of 5 and 35 and provides education throughout
primary and secondary levels. The school uses Unified English Braille, with 98 of the students
being braillers, and there is an an educational psychologist on site to help the children understand
their disability and needs.

The school has Public/Private status, enabling it to receive funding from the government towards
the teacher’s salaries and the food required for the residential students. However, a major financial
challenge for the school is the number of students whose families cannot afford to pay the school
fees, very common for disability-focussed schools in Rwanda. This school however found it
especially challenging due in major part to the very high costs of printing books in braille
(approximately Rf.4 million per annum). Since the school follows the national curriculum, the
government does contribute financially to standard textbooks, while no funding is given for the
braille-based books essential to these students.

The Rwanda Union of the Blind (RUB) may sometimes help towards the student fees if they find a
blind child needing schooling, while it is often the District Office decision and not the decision of
the families to place a child in a particular school. The school does not get the opportunity to work
with the student's families or their community, who in general tended to have a poor mindset
towards people with disabilities, seeing disability as a stigma. This lack of support to children with
disabilities provided one of the most difficult challenges to the school.

The school had conducted mobility and orientation training in the local community, and white canes
are used in the community but not in the school. A Turkish organisation had donated 100 canes, and
the students are allowed to take them home during the holidays. No incidents of individual self-
harming had been noted, while harm due to adventurous play and touching hot objects for example
during cooking, were noted.

Specific causes of blindness were not known, while it is suspected that these are a mixture of
genetic factors, accidents and difficulties during the birth process. There was no knowledge of
Cortical Vision Impairment aka Cerebral Vision Impairment. Four of the school’s teachers are
visually impaired while in other workplaces visually impaired people are not given equal
opportunities. Asked what initiative would be of most benefit to a blind child (or indeed to a
deafblind child), the Head Teacher suggested equal access to work, services and life opportunities.

The children are given a medical exam to confirm visual impairment levels before they are allowed
to enter the school, a vital process not available to the majority of deaf children in the schools
visited due primarily to lack of audiological facilities available. One of the students was previously
15
in a mainstream school but had encountered sudden sight loss, the cause for which was unknown.
Two students currently have rapidly deteriorating vision, four students have physical disabilities
such as limb deformity (not CP) and there are some with behavioural and learning needs.

Deafblindness: One five year old girl in the school may be deafblind, as she does not speak, while
staff at the local hospital have advised to wait and see as this lack of speech may be due to a lack of
social interaction within the family. There was no known link to any hereditary syndrome such as
usher within her family. She was amongst a group from Kigali who had been brought together for
socialisation, but instead it was decided they needed education and were placed in this school. As a
result of this directive, there was a surge in numbers into this school, with the numbers per teacher
in the phase one class growing from 8 to 11. No audiological tests had been carried out due to cost.

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 3. Amizero Centre, Kigali

Centre Director and Bishop: Rev. Eraste Ndakekwa

The English translation of the word Amizero is Hope, with this Centre based in the Kigali suburb of
Gikondo as a mission of the Gikindo parish of the Methodist Church. It is a day care centre for
children with disabilities, specifically downs syndrome, deafness, blindness & physical disabilities.
Rev. Eraste had previously spent fifteen years working with street children in Rwanda, particularly
those from Burundi and Congo whose families had been displaced and dispersed as a result of civil
war. Now in charge of this centre, he managed to discover disabled children by asking those people
who work as home-helps to keep a lookout for them.

The children are taught the basics of education, reading, writing, counting and singing, and there is
also a qualified physiotherapist and masseur on site who is himself blind. Once again, families and
community primarily reacted with shame. Eraste noted that more recently parents had become a
little more supportive, while change was still very small and inadequate to the situation. Services
for disabled people in general were mostly from faith-based I/NGO initiatives, while the
government had provided £9,000 to the centre last year to cover all areas of disability support there.
Very few young people with disabilities go on to secure employment, and the only one that Eraste
was aware of was a blind man who was in charge of a blind rehabilitation centre on the outskirts of
Kigali (see later meeting with Masaka Centre).

Deafblindness: There had previously been five deafblind children enrolled at the Centre aged
between seven and eight years old, two boys and three girls. All five had been completely blind but
partially deaf, though the level of deafness was not known. One deafblind girl also had a physical
disability and was a wheelchair user, possibly somewhere on the autism spectrum, with a tendency
to self-harm through biting herself.

The response of the families was once again primarily shame, ensuring they had been hidden within
their community without access to education or future work opportunities. These children had all
been sent to a school in the South, as the Centre did not have the facilities or training needed, and
despite following up all clues that emerged we never managed to locate them.

There is presently no official government policy in Rwanda towards deafblind people, partly due to
their being no officially recognised separate category of disability, unlike with, for example,
blindness and deafness. Eraste felt the most empowering first initiative for deafblind people would
be research to discover and map them within Rwanda, and then the setting up of a facility that
provided appropriate education and training leading to relevant employment. With a gleam in his
eye, he said that he would love to see a school set up for eight to ten deafblind children.

Asked if ministers in the Methodist Church would know of families with deafblind people, he
mentioned the Church Annual Conference during 8-23 November and suggested it might be
possible to raise this at some meetings. This was followed up but never confirmed.

The Bishop spoke quietly and passionately about the needs and what he would like to see happen in
Rwanda. He appeared as a strong advocate for children whose youth had seen so many challenges,
and it is likely that if a deafblind initiative was proposed for Rwanda, he would wish to play a part.

17
 4. Groupe Scolaire Gahini, Kayonza

Dean of Studies: Mr Rene

Groupe Scolaire Gahini is a public/private school in the district of Kayonza in Rwanda's Eastern
Province. It is an inclusive school with an advanced level secondary school, with blind students
learning side by side with their sighted peers. The school was set up by a missionary a very long
time ago (no date confirmed) and is co-owned by the Anglican Church of Ganini Diocese.

The inclusive A'level secondary school programme has twenty-four blind students split across the
three levels of senior four, five and six. These blind students mainly come from Kibeho School for
the Blind, as although it has an ordinary level secondary school for seniors one, two and three it
does not have an A'level facility. At Groupe Scolaire Gahini, these students are enabled to secure the
advanced level education that is so important for their future.

The school is staffed by trained teachers of the blind and two braille assistants, with braille used
throughout this inclusive programme.

The Dean confirmed that the present government policy towards students with disabilities is for an
inclusive education alongside sighted peers rather than specialist education. Inclusive education for
blind students began in 1994, while previous to that date there had been just one class for blind
students run separately to their sighted peers.

Three of the blind students are albinos, which is apparently a common feature in Rwanda, and one
of the blind students also had a physical disability.

It is quite common here for multiple disability to be present within the family.

The Dean was very honest in saying that inclusive education was not an easy process to implement
successfully. The school's inclusion programme faced a number of challenges, while the greatest
challenge mentioned, despite the school being government funded, was the cost of braille books
within the secondary curriculum (as noted earlier at HVP Gatagara). The greatest need at the present
time was for greater training of the existing teachers in the area of inclusive education.

He was aware of a total of just three inclusive schools in the whole of Rwanda, though there may be
more that he is not aware of.

Deafblindness: The Dean was not aware of any deafblind children/students in the area, nor could
he recall any during his long experience within the education system.

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 5. Home de la Vierge des Pauvres (HVP) Gatagara, Nyanza

Headmaster: Mr Gatari Jean Baptiste

HVT Gatagara in Nyanza is the oldest of all the HVP schools and also the headquarters for the
organisation. It is co-owned by the Brothers of Charity Congregation which runs the parent charity
of HVP Gatagara, and it is twinned with a school in the Netherlands.

The school is fully inclusive, with deaf and physically impaired students educated alongside their
hearing and physically able peers.

As well as being the headquarters of the organisation and an inclusive school, it also has on site a
physiotherapy and rehabilitation facility and a Technical, Vocational, Education and Training
(TVET) unit for work skills development.

The school provides for all four levels of education via nursery, primary, secondary and TVET, all
of which are fully inclusive.

HVP Gatagara provides residential facilities for those students who come from communities all
over Rwanda, while many whose families live nearby are able to go home each day.

The public/private status of the School ensures that there is some funding from the government, and
this pays the salaries of the teachers and a part of the food needs of the students. However, as 98%
of the disabled students come from the poorest families, securing the regular school fees is a major
challenge.

The greatest challenge described by the Headmaster was a lack of training in special needs
education. Many of the present teachers are not qualified in this specialist area, making if very
difficult for them to support the students with special needs.

Deafblindness: The Headmaster was not aware of any deafblind children/students in the area but
had in his long time within the education system met one child who presented as deafblind and with
whom communication occurred within what appeared to be a form of tactile sign language. He was
unable to suggest any areas or people to follow up and felt unable to suggest at this point how
deafblind children could be helped within the education system.

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 6. St Gabriel Deaf School, Butare

Headmaster: Brother Ntamagiro Bosco

Audiologist: Brother Peter Clever Bizoza

St Gabriel Deaf School was founded in 1967 by the Congregation of Brothers of Saint Gabriel as a
special school for deaf children and young people. In its present iteration it is an inclusive primary
and secondary school which also has a fully inclusive TVET programme attached.

The current status of the school is public/private, and therefore it is primarily funded by the
government, meeting the cost of the teacher's salaries, part funding of the food needs of the students
and provision of logistical support. There are currently 292 students studying at this school, of who
154 are deaf and 138 are hearing. Twenty-eight teachers presently provide teaching of the primary
and secondary curriculum.

The TVET programme is quite substantial and provides training in sewing, knitting, hairdressing,
carpentry and masonry. This programme has yet to achieve full accreditation from the Workforce
Development Authority (WDA), which would enable it to issue certificates that are accepted by
employers throughout Rwanda. However, the certification process was due to be implemented the
Sunday following our visit, and we wished them every success for securing this vital accreditation.

The school stood out for its provision of an Audiology Programme and Department within the site,
and a resident full-time qualified Audiologist who had recently returned from successful completion
of Audiology training in India. During our time of Action Research in Rwanda we were unable to
find any other school (with the exception of the Nyabihu School in the West where Eric works)
which has this facility and which seeks to test the hearing of every potential deaf student before
they are accepted into the programme.

The Audiology unit had a reasonably extensive range of equipment and a very large number of
donated hearing aids, most of which were donated by the Starkey Foundation of America and most
of which were second hand. We were unable to ascertain the quality and present calibration status of
the equipment in the time available, while discussion with the newly qualified audiologist, Brother
Peter Bizoza, suggested that he had a good vision and plans for developing the unit further. The
main difficulties he described were those of making quality ear moulds and securing sufficient
supplies of quality hearing aids genuinely matched to the specific tested needs of each deaf child.
Training of teachers for inclusive deaf education occurred primarily within the school itself

Deafblindness: Neither the Headmaster nor the audiologist had observed deafblind people in the
area or within their wider professional experience. However, the Headmaster had previously met a
deafblind man in his late twenties who could communicate by what appeared to be a form of tactile
sign language. It is very likely that this is the same man that the Headmaster from HVP Gatagara,
Nyanza (see earlier) had met at a venue in Kigali some time ago.

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 7. Kibeho School for the Blind, Kibeho

Head teacher: Sister Patricia

Kibeho school for the Blind was opened in 2009 by Franciscan Sisters Servants of the Cross from
Poland. It is owned and run solely by these Franciscan Sisters, situated in beautiful surroundings
that includes an internationally famous site of an alleged appearance of the Virgin Mary that is
visited by thousands of pilgrims every year.

Contrary to the present trend for inclusive education, this is a special school, run exclusively for
visually impaired students. It provides both primary and ordinary level secondary education, while
it also has a long-term plan to develop advanced level secondary education for its students.

Kibeho school is also an International School that presently provides residential schooling for140
students from across Rwanda, Burundi and the DRC. Its geographic location is the main reason for
its international intake, being located less than 70Km from Burundi and approximately 170Km from
the DRC. It appears as a well-run and quite well-equipped school, utilising Unified English Braille
(UEB) to teach the national curriculum, and has the necessary equipment and staff for processing
writing into braille.

Here we met out first deafblind student, between fourteen and fifteen years old and presenting with
both visual and hearing loss, though it was not possible to discover the levels of these. The phrase
that was used for him was partially deafblind, reflecting an ambiguity as to definitions of
deafblindness. He was being educated at the level of Primary Five and appeared to be living and
learning fairly successfully within this environment even without the availability of any obvious
form of tactile sign language.

Sister Patricia had not met any other deafblind children during her long experience in education, nor
was she aware of any others within the locality.

(Researcher Eric Ngabo with deafblind boy at Kibeho School for the Blind)

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 8. Masaka Resource Centre for the Blind (MRCB), Kigali

Director: Mukeshimana Jean Marie Vianney

The Masaka Resource Centre for the Blind was set up in 2000 as a branch of the Rwanda Union of
the Blind (RUB), wholly funded by that organisation. It is the only such Centre in the whole of
Rwanda providing a programme of rehabilitation for blind people, with a stated mission to train and
equip visually impaired people of all ages in life skills, mobility and orientation. Its stated goal is
re-integration of blind and visually impaired people back into the life of their community.

Students are trained here for a period of six months to equip them with the skills that will enable
them to live an independent life on return to their communities. The everyday skills of washing,
cooking and cleaning are learnt, together with provision of counselling and sport and leisure
activities. Central within this programme is the vision to help each student really understand their
loss of vision and come to terms with it, adapting to a new way of life and living.

Training is also given in HIV and Aids prevention and reproductive rights. The work skills that are
taught here are primarily within agriculture, as seventy percent of Rwandans come from rural
backgrounds. Finally, mobility training teaches the use of white canes.

The age range of its students was previously between 15 and 60, but more recently this has changed
as the Centre realised that it was also vital to provide pre-school training for younger visually
impaired students.

The Centre attempts to follow up the students as they return to their communities, and where funds
allow, to provide a starter pack of tools and equipment to help them secure an independent living.

Funding the work of the Centre is a challenging matter, particularly as they have found it is
essential to fund each student 100% in order to prevent removal of students by their families. The
government made a one-time grant to the Centre in the past, but has not provided any funding since
that time, and the premises are old and in need of repair.

Jean lost his sight as a result of being hit in the head with a machete during the 1994 genocide in
Rwanda. At that time he had been a secondary school graduate, and he managed to secure a place in
University as a blind student and successfully obtain his degree.

Deafblindness: During an earlier meeting of the RUB Jean had met some deafblind students who
had nowhere else to meet. The living conditions of deafblind people were terrible, particularly due
to the natural challenges of communication and isolation, and also because fathers tended to
abandon their family when a deafblind child was born, leaving the mothers to cope on their own.

This Centre was also being used to provide training of trainer courses in tactile sign language in
order to grow the capacity of trainers within Rwanda. One week before our visit there had also been
a training course for twenty deafblind people in social main streaming. Both of these trainings had
been provided by a female specialist from Uganda invited by the RUB, and we were later able to
confirm that this was Alice Nabbanja from SENSE International in Uganda.

The RUB had been working in cooperation with the Swedish Federation of the Deafblind (SFDB),
and together they had identified approximately 180 deafblind people under the age of 30 from five

22
Districts of Rwanda (this was confirmed at a later meeting with the SFDB). There had also been
occasions when a parent had brought a deafblind child to the Centre asking for advice and help.
9. Blessing School for the Visually Impaired, Musanze

Director & Founder: Jean Bosco Ntakirutimana

Blessing School is a relatively new initiative, founded by the Director in 2015 from the inspiration
of having a blind daughter. In 2014 his wife had given birth to triplets, two of them dying almost
immediately while the surviving child became blind. From that experience, Jean decided to set up a
school to help blind children and parents like him and his wife.

The school was begun with just seven children and one teacher and is owned by a registered faith-
based organisation (FBO) called Hillside Hope. It currently has 32 students who present either with
low vision or complete blindness, 5 of whom are albino. The approach to education was to provide
both special education and technical training, particularly via a computer classroom on site.

Jean felt that the families of disabled children and their communities were not supportive of people
with disabilities, and especially so regarding children with disabilities. Parents of blind children had
a strong tendency to hide their blind children within the community out of a sense of shame.

Among other approaches that Jean used to tackle this challenge was a parent and child forum where
all of the parents met with the children to discuss and address the issue of stigma and the other
negative treatment and reactions faced at home. At these forums Jean also asks a mature blind
person who has learned to deal with life successfully to address both the parents and the children,
inspiring and encouraging them through that example.

Most of the parents are too poor to afford the school fees, and while no child is turned away, this
provides real challenges for the school in securing enough food for the students. Jean felt that
government educational support was good, while none of the educational materials needed were
covered in that support. The school did have some individual donors and it also appeared to have a
current child sponsorship programme.

Another challenge facing Blessing School was not owning their own premises, and the facility
rented was tiny in relation to the number of blind and visually impaired students who wish to learn
there. At that moment they were not able to take on all who applied, and their vision was to utilise a
piece of land given to build a school that was able to provide the level of service really needed.

Deafblindness: There was one boy at the school who was blind and also had a hearing loss. He was
twelve years old and used a hearing aid, although his level of deafness, as so often, was not known.
His family was not supportive, with the father having left when the mother gave birth to two
severely disabled children. This boy's brother was also blind, and while he did not apparently have a
hearing loss, he was known to shake a lot, perhaps indicating cerebral palsy.

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 10. Musanze District Office/Sada, Deafblind Woman

Mother of deafblind daughter Sada

At the District Office in Musanze, the Director of the Disability Mainstreaming Office (DMO) and
the District Coordinator of the National Council of Persons with Disabilities were very honest with
us, explaining that the district had not carried out any form of research to identify deafblind people.

They were aware however of a woman in her early thirties called Sada who was deafblind, and the
District Office had sought to assist her through donating a cow via the Governments Girinka
Programme (one cow per family programme). This had been implemented through the District
Empowerment and Social Protection Unit as a result of advocacy from the District Disability
Mainstreaming Unit.

The District Office kindly contacted the family of the deafblind woman and arranged for us to speak
with the mother at their house.

Sada is 33 years old and was born deaf, becoming deafblind later in life indicating the possibility
that this was as a result of a hereditary condition such as Usher Syndrome. She had never received
any form of education because the local school authorities decided that she would be too old by the
time that she graduated or left the school.

She has never married and has always lived with her parents, and unfortunately her father, who had
been the family’s main provider, had died just two weeks earlier. When Sada had become blind, her
parents decided that only one of them should continue to work while the other would take care of
her, protecting her from any form of violence and abuse that could arise from her vulnerability.

The Government had paid for her to attend a few of the tactile sign language lessons at the Masaka
Centre accompanied by her mother, and apparently on some Fridays she also met with other
deafblind people there. The communication method of signs used with her mother and her siblings
appeared to be well understood by them, while it could not be understood by an outsider.

Sada had a deaf brother called Ally who was 23 year's old who had previously attended Nyabihu
School for the Deaf (where Eric works). Ally is slowly losing his sight, and this was confirmed by
Nyabihu Deaf School, again raising the possibility of a family genetic trait such as Usher
Syndrome.

The family was very poor, made even more challenging by the father's recent death, while the
mother was very anxious about how she and her daughter would continue to live. She was
particularly worried about how she would pay for the basic Rwanda health insurance which costs
around Rf.3,000 per person per year.

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 11. Gakenke District Office, Gakenke

Disability Mainstreaming Officer: Mr Patrick Muvunyi

This Disability Mainstreaming Officer in Gakenke was also very honest in confirming that no
survey had been done within this district that would determine the numbers of deafblind people and
their circumstances. The District Office did not have any overall numbers of people living with a
disability while information available on each type of disability was also extremely limited.

This lack of information meant that Disability Identity Cards only indicated a percentaged level of
overall disability but not a specific category of disability, such as deaf, blind, physical disability etc.
According to the data available there were 7,293 people within this district who had some level of
disability, and of those, 2,270 were people living with a physical disability.

Deafblindness: Patrick said that he was sure there were many deafblind people in the district, while
in his time in this role he had met one family with two deafblind boys. He had not witnessed any
deafblind person using any form of tactile sign language to communicate

He was painfully aware and concerned that deafblind people were exceptionally vulnerable,
particularly females, and that they and their families really needed a lot of help in order to live
effectively. He confirmed again that the community was not supportive of people with disabilities,
and that families would either tend to hide them within the community or abandon them.

When asked, what would be the next step if a mother with a deafblind child visited him asking for
help and advice, he replied very honestly that he would have no idea what to do or what to advise.

He was very aware that deafblind people could not help themselves by making appeals to
Government, and so the best method that the Government should adopt was to support the families
directly, teaching them the nature of this disability and that deafblind people can live empowered
and productive lives if given the right support and input.

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 12. Burera District Office, Burera

NCPD District Coordinator: Theoneste Ndayambaje

Social Protection Officer: Jean Pierre Barigira

It was not possible to meet with any staff from the District Disability Mainstreaming Unit in Burera
as they were in a meeting in Muhanga with the National Union of Disability Organisations in
Rwanda (NUDOR). However, we were able to meet with the National Council of People with
Disability (NCPD) District Coordinator and the Social Protection Officer.

Deafblindness: Theoneste and Jean readily confirmed that they were not personally aware of any
deafblind people in the district or their circumstances. However, it was a good opportunity to talk to
these key government people more broadly about this issue, asking the key question, “What would
be the next step if a mother with a deafblind child visited asking for help and advice”.

There were three steps they felt were important: Firstly to train the families in how best to assist
their deafblind child; Secondly, to contact the NCPD to obtain advice on how best to assist and also
find out if any funds would be available; Thirdly, to research and identify the schools in the district
that were most able to help. They cited a recent example of this in the case of deafness, with three
deaf children identified by the District Office then sent to Nyabihu Deaf School, with the fees for
this paid by the District Office. They had also identified three more recently.

Summarising this they felt the most important next step that the District Office could take in support
of deafblind people would be to initiate an Outreach Programme focussed only on determining the
numbers and circumstances of deafblind people. They confirmed that the District Office was always
keen to do such Outreach Programmes, with the key challenge always finding a partner for the cost.

26
 13. Ubumwe Community Centre (UCC), Rubavu

Programmes Coordinator: Mr Justin Nshimiyimana

The Ubumwe Community Centre in Rubavu is located in the North-West of Rwanda next to the
border with the DRC, founded in 2008 by two men, Frederick and Zacharie as the main branch of
the organisation. The Centre runs a very extensive programme of support for disabled and non-
disabled students. It serves 830 students,146 of whom have some form of disability with 52 being
hearing impaired and 29 being blind.

A staff of 71 runs the main programmes, which include an inclusive nursery, primary and secondary
schools, an inclusive TVET unit, a special needs department and a community-based rehabilitation
(CBR) programme. The TVET unit is fully accredited with the Workforce Development Agency
(WDA) which although inclusive primarily trains disabled students, with a present total of 72
students and a ratio of approximately 90% disabled to 10% non-disabled. The TVET training
programmes include music, tailoring, handicrafts and knitting, with graduates supported in finding
work and systematically followed up.

The Special Needs department focuses primarily on mental health and physiotherapy, providing a
half-year course to prepare students for entering the main school curriculum. The Community
Based Rehabilitation (CBR) department is a mobile programme, providing support for disabled
students within the community. An Individual Education Plan (IEP) is created for each student, and
after one year they are assessed for special needs and mental capacity with the possibility of being
transferred to a special school if considered most appropriate.

This Centre has a highly innovative approach to making inclusion work, especially from the
perspective of deafness. Sign language is taught as a compulsory subject right the way through from
nursery to secondary school and TVET, and there is a “Silent Day” every week when the only
language that is allowed is Rwandan Sign Language.

Audiological provision on the other hand is however modest with less than 10 deaf students using
hearing aids. Justin was very clear that more children could benefit from proper provision if the
service provider, Starkey Foundation USA, was able to take the time to provide a more complete
service rather than the typical “Ear Safaris” of testing and then dispensing second-hand hearing aids
via a 1 or 2 week programme in a local hospital.

The organisation has plans to scale up and has already established a branch in Bugesera District in
the South-East of Rwanda. It has a number of major supporters in the USA, Israel and Canada who
provide extensive funds that are renewable on a 1-year review basis eg The Canadian INGO A
Better World and B'nai B'rith in Israel. Members of the National Council for People with
Disabilities (NCPD) and NUDOR are on the board of the school.

Justin's previous career was as a University lecturer in Kigali during which a chance encounter with
one of the school's founders impressed him so much that he embarked on a major life change. He
was now responsible for the coordination of all departments of this major organisation, presenting it
with a clarity and passion that was very impressive.

27
Deafblind: Justin had up to that point never encountered any deafblind people during his
experience of this work.
14. Komera Centre, Rutsiro

Coordinator: Mr Elias Serugo

This school was founded in 2006 by Rev. Father Eugene Murenzi in the remote rural area of Rutsiro
in Central-West Rwanda,with the vision to care for children with disabilities and other vulnerable
children. It is owned by the Catholic Church and founded as a private organisation, while in 2014 it
became government funded with the requirement to follow the national curriculum. Prior to this
change, the school had not sought to recruit students in any particular area of disability, seeking to
help all, but with the need to now follow the national curriculum it had of necessity become more
focussed.

Since 2014, although the school remains primarily a special school, it has adopted a modest
inclusive approach, particularly within its TVET programme. Out of a total of 81 students (42 girls
and 39 boys), 54 were deaf, 24 had some form of mental disturbance, 1 had a mixture of disabilities
and 5 were non-disabled. The ages of these students ranged between 6 and 25 years.

The school designed Individual Education plans (IEPs) for each student and provided Primary
levels 1-6 with students subsequently undertaking either the national exams or a TVET programme.
The TVET programme provided training in the skills of masonry and tailoring. The school also has
a Mental Health Programme and a Community Based rehabilitation (CBR) programme had just
been started. This CBR Programme provided home visits to bridge the gap between the school and
the communities from which the students came and also sought to help with the special medical
needs of some students, helping them access the care they needed and sometimes pay for the
medical care of those students from the poorest families.

All student and staff members at Komera were taught a basic level of sign language. Some students
had received hearing aids from attending a Starkey Foundation “camp” in Kigali. However, Elias
explained that his brief encounter with the Starkey camp was not impressive-he considered that no
proper testing could have been done in that time and that most of the students had thrown away the
hearing aids they had been given. Elias was concerned and puzzled by this process, and we spent a
considerable amount of time discussing what is really needed for the successful on-going use of
hearing aids.

Elias had previously trained at a College of Education where he encountered for himself the
challenges of disability. Following graduation, he taught in a secondary school, after which he
became the Head Teacher at a nearby inclusive school. From there he had then moved on to the
Komera Centre where he described the students as feeling at home within the centre while feeling
rejected by their communities

Deafblindness: Elias had never met any deafblind people, but he had talked with colleagues in the
education system and had assumed that they must exist in reasonable numbers. He felt that it would
be essential to have a deeper Outreach Programme to locate them, with the need to end their
isolation by making them visible, sensitise their parents via counselling and possibly partner with a
school for the Blind.

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 15. Rwanda Union of the Blind (RUB), Kigali

Executive Director: Donatilla Kanimba

The Rwanda Union of the Blind (RUB) is a civil society organisation working for the improvement
of the living conditions of people living with a visual impairment via education and rehabilitation
that lead to meaningful equality and integration. Donatilla became blind at the age of five but was
nevertheless able to continue her education in Kenya, graduating from University. She lived and
worked in Kenya for ten more years before returning home to Rwanda in, one month after the
genocide, to set up the Rwanda Union of the Blind. She discovered that Rwanda did not then
provide for blind children to take their national examinations and that no secondary school would
accept them. One great early great success story of the RUB was having these policies reversed.

Deafblindness: RUB had worked in partnership with the Swedish Federation of the Deafblind
(FSDB) to help Rwandan deafblind people create their own representative organisation, Rwanda
Organisation of People with Deafblindness (ROPDB)

From Outreach work carried out in three Districts of Rwanda, 167 deafblind people had been
identified while detail was patchy. The majority were children between the ages of 2 and 18 years,
while there were some adults between the ages of 50 and 70. The majority of the 167 identified
were male and the majority of the older men were married. None of the children were in any form
of education and none of the adults were known to be in work. Some had additional physical and
learning disabilities (usually some level of autism) and there were some cases of self-harming.
Interestingly there were a large number of families within which there was a family trait towards
deafblindness such as Usher Syndrome.

In general, the families of people with deafblindness were not very supportive, resulting in extreme
loneliness for the deafblind children. Community understanding and attitudes were equally poor,
regarding them with pity and to be kept out of sight. One example given was that a neighbour might
call the family saying that their child was outside their house and to remove the child, considering
the child a threat to life. This had begun to change somewhat through families receiving training in
tactile sign language at the Masaka Centre near Kigali. Some families were now using Rwandan
Tactile Sign Language (RTSL) for communication, while many more training sessions were
urgently needed. Rwandan tactile sign language is presently being further developed in partnership
with deafblind people who lost their sight at a later stage of life, with 500 signs developed to date.

There was no official government policy towards deafblind people or recognition of deafblindess as
a specific category of disability. Donatilla felt government departments were either not aware of the
existence of deafblind people or did not understand they could lead empowered lives. She
emphasised training in life skills to enable them to live independently and learning a special braille.
She was concerned at some excessive gratitude shown for help given. Some limited government
and civil society support had provided deafblind men with families with houses and cows (but not
women), and the RUB itself provided some goats.

RUB was the only organisation engaged in serious Outreach Programmes to discover deafblind
people, visiting them in their homes once they had been identified. There was no educational
provision whatever in Rwanda for deafblind children and Donatilla emphasised that this was a vital
subject that should be discussed soon

29
 16. Groupe Scolaire Rosa Mystica, Kamonyi

Head Teacher: Sister Crescence

Groupe Scolaire Roas Mystica School was located in Kamonyi District in the Southern Province of
Rwanda and was the only school for children with disabilities within this district of 400,000 people.
It catered for a very wide range of disabilities, with both an inclusive and a specialist programme,
including deafness, physical and mental disabilities, autism and multiple disabilities. The school
strongly promoted sign language, with all students trained in this skill together with the volunteers
who subsequently taught this in the local community.

An Individual Educational Plan (IEP) was created for each child and a wide range of life skills were
taught to assist with integration back into their communities when they left. There was also an on-
site rehabilitation unit to which children from other integrated schools came for assistance.

An autism programme had been started, a very rare development in such schools as it was generally
considered too expensive to provide this level of assistance at a cost of around Rfs.3m per year per
child. This programme was very much an experiment, with 64% on the programme transitioning to
inclusive classes, and 5 of these children ready to go to inclusive classes the following year.

Five of the deaf children at the school used hearing aids. This had developed as a result of a
programme of medical assessments from which some children had subsequently been sent for
audiological testing by Father Bizoza from the Saint Gabriel Deaf School and fitted with hearing
aids by their Indian-trained audiologist. However, this was expensive and difficult due to the 110
mile journey, and many more of the children could benefit from this opportunity if funding was
available.

Deafblindness: Sister Cresence did not know of the five deafblind children that were claimed by
the Amizero Centre to have been sent and enrolled here. During an outreach exercise during 2010
she had met a five year old deafblind boy, but the Head Teacher of the time had not followed up and
she did not know his whereabouts, although she thought he may have been sent to a school in the
South of Rwanda.

17. Argawal Eye Hospital, Kigali

Eye Surgeon: Dr John Nkurikiye

A meeting with Dr John had been recommended to us by another contact who thought that he might
have met quite a few deafblind people as a result of his work. He kindly agreed to meet with us but
confirmed that he could not recall even one such person. Most of the time he refers blind children to
the Kibeho School for the Blind as he feels that it is the best school for blind children in Rwanda.

30
 18. National Union of Disability Organisations in Rwanda (NUDOR), Kigali

Livelihood Coordinator: Emile Vuningabo

Fundraising/Networking Manager: Faustin Renzaho

The National Union of Disability Organisations in Rwanda (NUDOR) is an umbrella organisation

established in 2010 by eight disability organisations and exists to strengthen the voice of the
disability movement in Rwanda. NUDOR and its thirteen members work to ensure that persons
with disabilities can enjoy the equal rights to which they are entitled, focusing its work in the four
main areas of education, health, livelihoods and human rights/advocacy.

Deafblindness: From a previous meeting with RUB, we had learned that in 2017 NUDOR and
SENSE International had begun a project to help improve the livelihoods of deafblind people.
NUDOR confirmed that the project involved both supporting the improvement of livelihoods of
families with deafblind people and also training them and a family member in Rwandan Tactile
Sign Language.

That project covered four districts of Rwanda and it was supported technically by Sense
International Uganda, with financial support from the Scottish government via CBM UK. The main
aims of the project were to take deafblind people out of loneliness and to learn basic life skills and
Rwandan Tactile Sign Language at the Masaka Resource Centre for the Blind.

Between 2-12 December this year, Sense International Uganda via a consultant trainer, Alice
Nabbanja, delivered a training programme in Rwandan Tactile Sign Language and functional
assessment to 22 beneficiaries. A group of deafblind people are presently seeking formal
registration of the Rwanda Organisation of Deafblind (ROPDB) as an NGO via the Rwanda
Governance Board.

31
 19. Swedish Federation of the Deafblind (FSDB), Sweden

Project Manager: Ms Sophie Toomvali-Peterson

Vice-President World Deafblind Federation: Mr Klas Nelfelt

The FSDB had sought to begin a project in Rwanda in 2010 but had initially found it difficult to
gain sufficient traction. In 2011 they started again and have since been working in partnership with
Rwanda Union of the Blind (RUB) in a project to identify and help deafblind people in Rwanda. To
date they have identified 167 deafblind people from three Districts in Rwanda, leading the Project
Manager, Sophie, to estimate that there could be approximately 2,000 deafblind people spread
across the thirty Districts of Rwanda.

This project has focused on two key initiatives, firstly identification of deafblind people through an
outreach programme and secondly on communication.

Sophie confirmed what NUDOR had shared that as of the previous year enough deafblind people
had been identified to enable the setting up of their own organization, Rwanda Organisation of
Deafblind People (ROPDB).

The group talked extensively about the need for a deafblind school in Rwanda, and Sophie also felt
that a collaboration of SFDB and DeafReach would very much strengthen their already successful
project.

It was also noted that the World Federation of the Deafblind (WFDB) were pursuing the World
Health Organization (WHO) to recognize deaf blindness as a specific class of disability (too date
the WHO recognises the five classifications of disability of deaf, blind, mental, physical and other).

Interpreters:

Anna Josephsson
Asa Kohtamaki
Joachim Israeisson

32
 20. Blind & Deafblind Association, Rusizi

Coordinator: Godberthe Nyirarandayambaje

The Blind and Deafblind Association is located in the far Southern District of Rusizi in Rwanda's
Western Province. To date they have identified 21 deafblind people in that District, while more are
anticipated as the mapping of all of the sectors in the district had yet to be completed. These 21
range between 4 and 50 years of age while the majority are between 4 and 20. There was no precise
breakdown of the gender balance, while the majority discovered were female. One deafblind man
was married and had three children. Three of those identified had mild visual and hearing loss, five
had profound visual and hearing loss, 8 were somewhere in between and several presented with
physical and mental disabilities.

Godberthe described the families as generally supportive, while some were less so, illustrated by
RUB workers discovering a deafblind child living in the kitchen during a mapping exercise. This
family believed that the child had bad spirits as a result of witchcraft and were afraid that the child
would transmit those spirits to her siblings. Such beliefs were quite widespread in this region, with
deafblind people and their families seen as cursed and therefore to be avoided and excluded from
relationships as a method of prevention. These attitudes and beliefs had resulted in the deafblind girl
sleeping in the kitchen and had resulted in multiple fire injuries.

This example also pointed towards a possible explanation of the high death rate noted amongst
deafblind children, with five now dead out of the 11 identified in 2016. Although the circumstances
of these deaths differed considerably, the factor in common was neglect within the family.

Access to appropriate education was almost non-existent. One of the deafblind children was
attending a local school but the teachers were not able to help him, and the purpose was just to be
with other children. As a result, the boy had been repeating the same class for several years.

Very limited services or support were available to deafblind people in this District. The Rwanda
Union of the Blind (RUB) was working in partnership with the Swedish Federation of the Deafblind
(FSDB), and it was thanks to this project that these were identified and were attending
communication training at the Masaka Centre. Thanks to this initiative, communication was
improving while there was a long way to go until this training enabled truly effective
communication within these families.

Asked what initiatives she felt would be the most empowering to a deafblind person within this
community, Godberthe indicated the first priority as the training of families of deafblind people in
communication so that they can know how to look after them properly. Her second priority would
be to provide appropriate and full education, together with life skills training which would enable
them to become independent.

She had noted one case of self-harming where the family had to tie their deafblind child at all times
to stop him biting himself all day. This child had since died. Transport links in the District were
generally poor, as most deafblind people lived in remote rural areas where roads were not good
enough to facilitate movement of people with visual impairments.

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 21. Rwanda Aid, Kamembe

Coordinator of Programmes: Janyis Watson

Rwanda Aid is a UK based INGO founded in 2002 by retired Headmaster David Chaplin, with its
work based entirely in the two most southern districts of Rusizi and Nyamasheke in Rwanda’s
Western province. The organisation is warmly supported by the High Commissioner while the
approximately 20 staff report directly to the UK base which provides the oversight and governance.

The organisation focussed on four main programmes, Farm Training, Vocational Training, Street
Children and Disability.

At that time its disability programme had 80 children many of whom had been abandoned and who
had a wide range of disabilities. The children were given three foundation years within the
programme before being admitted to primary school, with half of those children now settled in
primary school. The programme had the clear goal of re-integrating these children into their
communities.

The programme also supported a centre in Nakaka which is non-residential and which the children
can attend one day a week. There was a strong desire to upscale this into a fully residential
programme for these children.

We discussed what level of sign language trainers were available in Rwanda, and Eric was able to
provide considerable information to them from his role at Nyabihu School for the Deaf. Rwanda
Aid are very keen to offer sign language training to state organisations such as the Police and local
hospitals.

There had been some limited audiological assistance for the deaf children from the USA Starkey
Foundation, and Rwanda Aid had succeeded recently in installing a sign language interpreter in a
local mainstream school.

Deafblindness: Rwanda Aid had at that point carried out a formalised mapping exercise in these
two districts, and Janyis confirmed that they were not set up for assistance to either blind or
deafblind children.

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 22. Groupe Scolaire Filipo Smaldone, Kigali

Headmistress: Sister Jeanne

This inclusive school in the suburbs of Kigali had somewhat limited staff numbers and had adopted
a communication method of speech with sign support for everyone. From nursery up to the level of
Primary 2, deaf children studied alone and then in primary three, the highest class available there,
they were brought together with hearing children.

The school was clearly proud of the progress of its students, and some of those deaf students were
themselves surprised to realise that they were achieving academically at the same level as their
hearing peers. Screening for vision impairment was not available at this school, while the level of a
child's deafness had to be confirmed through formal testing before entrance was granted.

In terms of audiological provision, they had previously received the visit of an audiologist from
Belgium, and although they had audiological testing equipment available there were no trained staff
at the school who were capable of using it professionally.

The USA Foundation, Starkey, had previously been involved in providing hearing aids to some of
the school's students and the school would be alerted when Starkey were in a particular area of
Rwanda so that the parents could be informed to come and attend one of their “camps”. Some of
these deaf children had received hearing aids, while unfortunately there was no one trained to
monitor the use of them. The result was that many of those children did not wear them because of
the challenges of feedback/whistling and even headaches from unsuitable or badly fitting ear
moulds while some were simply lost.

Deafblindness: There was no knowledge within this school regarding aetiology conditions for
deafness and deafblindness.

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 Conclusion and Recommendations

Conclusion

The action research provided both a wide overview of disability across Rwanda together with the
more focussed overview of deafblindness amongst a range of relevant actors in this sector.
Throughout this time we sought an answer to the question:

“If a mother brought a deafblind child to you seeking help, “What would be the next step?”

The answer from this wide range of actors was primarily that they would not know what to do or
what to advise, primarily due to an absence of knowledge of this disability, its prevalence and what
assistance was available.

At the same time it was also wonderful to hear of the existing work of the Masaka Centre with its
training programmes in Rwandan Tactile Sign Language, the Blind & Deafblind Association in
Rusizi, the combined partnership of the RUB with the SFDB and the work to formalise and develop
the ROPDB.

It was also hugely encouraging to hear from amongst the many dedicated people that we met a clear
and warm desire that there should be a full response in Rwanda to the needs of deablind people.

Recommendations

1. Consider whether there is a “stand-out” organisation and leader within Rwanda within whose
existing programme and premises a first deaf blind centre/school could be established.

2. Consider the creation of an umbrella group of concerned and involved organisations and
individuals to develop and make a coordinated whole-country response to the needs of deaf blind
people in Rwanda.

3.Linked closely to 2, consider whether this could also involve a “cross-border” approach that
included involvement of the present emerging deaf blind initiatives in both Congo and Burundi, as
three countries with such close historic ties and a common language. As a minimum this could
involve information sharing, while desirably also sharing of training expertise developed and other
practical support. This approach could be developed either at the same time as 2. above or as a
subsequent addition once the umbrella group in Rwanda was firmly established.

4.Consider a working Partnership with the FSDB to practically support the present initiatives in the
development of Rwandan Tactile Sign Language, training of trainers in tactile sign language and the
emergence of the ROPDB.

5.Consider the drawing together of involved INGOs such as Rwanda Aid, Chance for Childhood,
FSDB etc to put “International” pressure and encouragement on the Rwandan Government to
consider their engagement in the needs of deaf blind people.

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 Appendix 1: Research Questions

1. What is the number of deafblind people in this location?

2. What is their age?

3. What is their sex?

4. Are they married or single (if of age) and do they have children?

5. What is their level of deafblindness (broad indications)?

6. What are the circumstances of their family and siblings? Is there any trait towards
deafblindness within the family eg Usher syndrome?

7. What are the family circumstances of the person with deafblindness? Is the family
supportive and do they have any method of communication?

8. Are the deafblind people in education of any form, and if so, what type eg formal,
informal?

9. Are the deafblind people in work, and if so, what is the type of work and its
circumstances?

10.What is the Communities understanding of deafblind persons? Are they hidden away? Is
the community broadly supportive? If so, how? Does the community have understanding of
the causes and challenges of deafblindness and how they can help?

11. What services and support, if any, are available to deafblind people in this area, via
Government (Education Dept; direct support etc), I/NGOs or other organisations?

12. What is Official government policy towards deafblind people?

13. Are specific methods of communication being used by deafblind people and their
families (eg tactile communication) or are there any initiatives to develop these?

14. What initiatives do you feel would be the most empowering to a deafblind person within
this community?

15. Recognising the absence of newborn screening resources, can you indicate congenital or
late age onset age at which secondary sensory change identified?

16. Are there any other additional needs/disabilities in the individual’s profile?

17. Are there any craniofacial features?

18. Are there any incidences of self-harm?

19. Is there access to useful technology in the locality?

20. What is the quality of transport links available to nearest towns, cities etc from this
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locality?

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