CDLP16 Uganda: The Campaign for Accessibility Legislation

CDLP16 Uganda: The Campaign for Accessibility Legislation

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Apollo Mukasa, who comes from the Uganda National
Action on Physical Disability and, which is another grantee organisation of the Disability
Rights Fund. Ugandan National Action on Physical Disability
has done some really critical legislative work in an environment, which is not very
easy to make legislative change in Uganda, so attention to Apollo, thank you.
MR MUKASA: Thank you Diana, good afternoon ladies and gentlemen, I’m privileged to be
here in Ireland for my first time. I came in a bit late I think, due to some
unavoidable circumstances and flight delays I wasn’t able to make it in time, but I’m
here. I’m glad to see you all. I’m going to tell you briefly what the organisation I’m
leading has done for the past couple of years. I work with the Uganda national organisation
for the disability, it’s just an organisation for people with physical disabilities, which
has been in Uganda for a couple of years, began in 1998 and so far it has 40 member
organisations. Our mission is to remove barriers in society that prevent people
with physical disabilities from enjoying full rights, our suggestion or our mission. Our mission is to remove barriers from people
enjoying equal rights (inaudible). UNAPD in brief, we have a number of programmes
we do in advocacy, I won’t go through all the programmes we do, I’ll best focus on the
key programme we do a lot, which we have done for the last couple of years, that is advocacy
for physical accessibility. Why have we chosen this programme? People
with physical disability, we have limited participation, our enjoyment, our independent
living, our safety, because the environment we work in is inaccessible, we have in an
inaccessible investment. We believe in you have (inaudible). Because of inaccessible environment we’re
limited to participating not fully in life, to being independent and all that, so we chose
that component of physical accessibility as a key advocacy area to focus on in the country. I just want to take you through, I know most
of you know, but for those that don’t know what do we mean by context of physical accessibility,
what do we mean by the term physical accessibility? By simply what is physical accessibility. We have just four simple terms, briefly, one
is the ability of the person to reach a place and manoeuvre within it, my brother Frederick
is able to be here in this place it means it’s accessible. He is able to move here independently.
But if you told him to move up there, I don’t think he can go there, like my sister who
is up there, he can’t go that, that means he can not move freely in the place, independently. Two, use the service. Access goes to merely
living and reaching the place, but using the service, me with the microphone this means
it’s accessible, if this microphone was up there at the top of the building it means
I can’t be there because of the steps at the side of the hall, but I’m here using the microphone,
and able to talk to us because it’s here, it’s accessible and I’m using the service. Receive and use information, that’s part of
the accessibility, and participate in daily life is part of the accessibility. Four different
concepts we use for physical accessibility in Uganda which generalises the term physical
accessibility in lines with human rights advocacy. When I present sometimes with a couple of
issues, some people believe by seeing, they don’t believe unless you are into it or you
see somebody going through it. If you look at the pictures, look at the picture
on the screen there, you can see two people in a wheelchair, these are the wheelchairs
we have in Uganda, the tricycle, they have three tires, very strong ones, we can reach
every terrain, but look at the picture, the lady and gentleman trying to access the primary
school, but can’t be there because of a very inaccessible environment. Look at the gentleman, he is trying to access
the facility, could be a hotel or an office, could be a toilet, but look at the way he
is being dragged into the place. Is that independent living? Is that being there with safety? Is
that promoting the integrity of the person, being pulled like an animal into the facility?
That’s what we’re trying to fight for in the country of Uganda, to prevent this kind of
thing, by pulling someone pulling me to somewhere, but you are degrading me, my liberty is gone,
my respect is gone and my subjectism is taken away. Look at the lady in the wheelchair, she is
being dragged, she is being helped actually, in a wheelchair to access the facilities,
the building, but in lifting her in the wheelchair what can happen if one of those two gentlemen,
one of them falls over? So you can look at all three pictures and put yourself in the
pictures and see, as the person in that picture, if I’m the one, how would I feel if I’m dragged,
if I’m lifted if I’m put anywhere on the pretence of helping me to be somewhere. That’s what
we’re fighting for, to prevent the barriers in society, prevent those people from accessing
services and from independent living and we’re promoting their safety and dignity in life. Look at the lady, beautiful lady going into
the office, can’t climb the steps, she is being carried like a baby, she can’t access
those places, office buildings, which are full of steps, she is being carried in arms
of people, because she can’t get there independently. This is as you can see the picture, you can
see. Now we go to the legal framework what is in place in the country of Uganda? I would say it’s one of the countries in Africa
which I think has the most, one of the countries with the most disability friendly laws, we
have laws in the Parliament of Uganda which talk about disability, human rights a lot.
A lot. Parliament is good at passing laws in the
country, developing policies, putting them somewhere, the policies must be sensitive
and the national policies and framework, (inaudible). Despite all the framework we have in the country,
the extent to which they are implemented, to what extent are they real, to what extent
are they helping the people in the country. (Inaudible) we say no, enough is enough, advocating
for the rest of persons with disabilities in Article 9 of UNCRPD, Article 9 for people
that know it, is an article on physical accessibility. We began the campaign based on Article 9 and
the campaign began in the run up 2008, 2009, 2010, myself, I was part of the team that
developed the first ever accessibility standards. Standards are guidelines which are used, which
guide, if you’re constructing an accessibility facility, a toilet, a latrine, a hall like
this one, how make it user friendly to the disabled person? How do you make it user friendly
to everyone? We were the first organisation in Africa to make this document, I have a
copy here, the first ever, I think the first ever in Africa, in the local context. So in 2008 and 2009 and it launched in 2010
as the guidelines, a national document to guide constructors when they are constructing
a facility for disabled persons, they must follow this. They must follow these standards. In 2011 we realised need to launch to establish
what we called a national task force, which will monitor the national standards, so we
launched the national task force the national accessibility audit team, which is composed
of professionals both from social work to disability rights advocates who are responsible
for monitoring the construction of the facilities, to ensure what accesses are accessible to
facilities. That picture there to show you the work they
do. They do audits of a facility to ensure that, or to assess it, that it is aligned
with accessibility needs of persons with disabilities. That’s what we call accessibility. In 2012 the standards we talk about here,
were duplicated in other countries, in Ghana, I think in Kenya and I think even Zimbabwe,
all from Uganda, our single standards from guiding the construction of accessible facilities
for persons with disabilities in Africa. In 2014 these standards won an award by UN
Committee of experts as among the 65 most innovative policies in the world in promotion
of accessibility involving persons with disabilities. Having done all that, within almost the same
time we were evolving these standards my government of Uganda was also by then in the process
of developing what we call the Building Control Bill. The Building Control Bill by then was
a law, which was mandated to regulate the construction industry in the country of Uganda.
By that I mean it was supposed to guide, to regulate, to monitor, supervise and mandate
everybody in the construction industry, if you are building a building, a road, what
guidelines, what standards must it fit to ensure that it protects, not restricts that
includes people with disabilities as well. So between 2008 and 2010 the country was working
on that bill by then. In the same period as I mentioned we were developing these standards,
so these two documents came online at almost the same time and (inaudible), how can this
control bill by then be invoked, how can it be invoked and be compliant with persons with
disabilities. We employed strategies, how can we ensure
(inaudible), we engaged the Ministry of Work through meetings and training to understand
the context of accessibility and its need. Two we lobbied the Ministry, the Ministry
of Works and Transport, to include on the technical team the developing of the control
bill. Three, we engaged the media, to send out messages
on the meaning and benefit of making a place accessible to everyone, including persons
with disabilities. Next we held professional development courses
through architects to train them to appreciate when developing a facility they must ensure
it’s in line with this. We get MPs of Uganda, including those representing
the persons with disabilities to make them understand that it’s the right of every single
person to access a facility like everybody else, whether passing laws, that they are
compliant. And lastly we formed a coalition for DPOs
and civil society organisations to come together to send messages on respect of Article 9. Finally what was the end by then? In February
of 2013 the Building Control Bill was passed into an Act by the Parliament, and signed
by the President of Uganda in October 2013, and when it was signed by the President, the
Act adopted the standards as one of the reference documents to be referred to when constructing
any facility in the country of Uganda. What next, is ahead of us? One, when the Act
was passed the next act to be taken was the Ministry of Work was responsible for developing
regulations for the Act, so the Minister of Works joined the team to be part of them,
we are part of the process, that’s ongoing. Two, we are still lobbying the Ministry of
Works officially to enforce the Building Control Act, it’s not yet in force, it’s at a standstill,
but we are now onto the Ministry of Works. Lastly the formation of coalition to advocate. The last one continue development partners
to continue funding the accessibility advocacy work in Uganda. I will stop now because of
time, you can look at this if you have time as well, thank you so much. [APPLAUSE] CHAIR: Thank you Apollo, you can sit down
and take the
questions or stand, however you want?>>First off Apollo congratulations on all
your accomplishments, the UNAPD, here’s a question though, your organisation as I understand
it, you’re dealing with accessibility issues with people with physical disabilities, in
Uganda are there similar kinds of organisations that deal with issues concerning other kinds
of disabilities, psychiatric disabilities, about that? If not, is there any kind of attachment,
any kind of groups more of a global unified approach. MR MUKASA: Thank you. Yes we have organisations in Uganda for other disabilities, for the
blind, deaf, deaf/blind, a number of them. We have advocates in the country, we don’t
do it alone, we combine together. When you are doing advocacy even for accessibility
in Uganda, we combine with others, because in teamwork, you can succeed more than working
alone. So we do combine advocacy.>>Thank you very much for your presentation,
you briefly mentioned members of Parliament representing persons with disabilities, and
would you mind describing a bit those reserved seats, reserved elected seats for representatives
of persons with disabilities, how are they elected? Do they have a special mandate, who
can stand for election? Thank you. MR MUKASA: Uganda has, as part of the constitution,
we are represented by five members of Parliament, five. Four per region, that is north, east,
west and central and one representative for women with disabilities and elected they are
elected by people with disabilities alone. So we combine together and elect those members
of Parliament, the five of them. So they are not elected by anyone, they are elected by
the actual people with disabilities. Have I answered your question?>>Is there an obligation to consult are they members of specified parliamentary groups?
Is there an obligation to consult them when it comes to legislation? MR MUKASA: Yes, although they sit in the parliamentary forum their mandate is to represent issues
of persons with disabilities primary. So when we have advocacy they are the driving force,
we begin from them. Take our issues to the parliamentary forum. So their mandate there
is to put the issues of disability on the frontline desk of Parliament for discussion
or for debate.>>Thank you very much, I’m one of the persons
who has been able to have your access standards, they are nice and we’re looking forward to
working on the alliance of that. My question is a follow up to the question asked by my
colleague, have you been able to work with other DPOs and you said yes, I know in Tanzania
the process, when it comes you are working on a particular issue, that is focusing a
particular type of disability, then the support from other DPOs that are working on other
types of disabilities, somehow it’s a challenge. I don’t know if you have this same experience
in Uganda, because feasibility, accessibility and permission maybe will be more or less
aligned with people with disability, with deaf or people with visual, I don’t know,
what is your experience of this? MR MUKASA: Our experience in Uganda could
be somewhat similar, for instance when we were championing the cause for this advocacy
work they look at it as more affecting people with physical disabilities, because it focused
on accessibility, more physical. But I think sometimes because it was that way, but after
working and you bring them on board, to understand how the accessibility affects a blind person,
how accessibility affects a deaf person, after understanding that connection, then they came
back together with us. At first they look to see it’s not an issue, or a person with
physical disability issue, but how do you explain to a person who is blind or a person
who is deaf, that despite being deaf accessibility affects you and then they come together with
this, finally appreciate and come together. Sometimes people don’t understand the context
of accessibility. How do you interpret that broadly? How it goes beyond reaching a place,
but accessibility goes even beyond, it goes even to the way you sit here, I’m visually
impaired, I look at the way the lighting is constructed, how does the lighting affect
a visually impaired person? Because of that, if I’m visually impaired, if I have a deaf
impairment, how does the sounding system of this hall affect that person? So it depends
how you’re conscious to accessibility. It’s more than accessing a building, the steps,
the lift, whatever, it goes beyond that. That’s why I said the four concepts, using the service,
all that kind of thing, the conscious, how you can raise it. It depends on how you bring it out.>>I can see that you are successful with getting combined work among the different
disability groups to provide accessibility in the services, what happens in your coalition
in terms of funding? And is there any competition among the disability groups about receiving
funding? Or do they collaborate about one group getting money but the other groups don’t
get money? How does this work? MR MUKASA: When it comes to funding it’s different.
Like any funding, it’s competitive. But when it’s down to areas it can be UNAPD and for
the blind, but we combine together and write a joint proposal as two organisations, if
it’s for physical and for the blind, we come and say let’s write a joint proposal that
can bring us together and we compete for the proposal, that’s one thing. There’s also another area whereby your speciality
is in that, for instance if it is going to be the lead organisation in this kind of work,
physical accessibility, so if you are leading in an area and you are known for that, fine
if you write a proposal to a partner, of course very few may compete with you because of your
speciality, the work you have done will follow a long way, very few will write a similar
proposal like you have written, but of course maybe competing for the same donor. So competition is there, you’re right, but
it depends how you frame the proposal, sometimes you prepare joint proposals for the same donor,
sometimes you apply to the same organisation, depending on your area of work, but it does
not mean that you don’t compete. How smart are you and how good you are in looking for
the funding. CHAIR: As one of the donors to UNAPD, I just
want to follow up that comment by saying that two the two largest funding streams that we
have are restricted to coalitions of organisations, so there must be three or more organisations
working together in partnership with a memorandum of understanding outlining the roles of the
partners in order to get funding. There’s an additional question down here.
>>With regard to broad interpretation of accessibility, we do litigation work in India,
so we had a case wherein the insurance companies were not willing to provide insurance to persons
with disabilities, because it was their thought that we are more prone to accidents, because
we are disabled. So a high premium has to be paid by us and
therefore by implementation of courts these high premiums (inaudible), so there is a broad
way of understanding, it includes services not only physical accessibility, but also
accessibility to services. CHAIR: I’d also like to open the floor to
any questions for Yeni, and when she gets back Catalina, if there are questions that
remained from the other speakers?>>I have a couple of questions, one is for
the last presentation, I’m wondering if you have court cases, probably cases that you
have won or if you have a team working on litigation of this issue? And another question probably to Catalina,
following the conversation about mental illness or intellectual disability that people are
saying for example that the US I’m not sure if it is over but there are instances where
we think or we reach a decision that a person is no longer able to give an informed consent,
and if this is the situation how do we go about with the Convention? The Convention
seems that this is citing presumed disability, it ensures formal consent but on the other
hand there are ongoing debates, that are instances where someone at some time is not able to
give informed consent. Thank you very much. CHAIR: Apollo do you want to answer the one
part or I don’t know, John, do you have any comment on the informed consent issue?
MR WODATCH: I can. MR MUKASA: Thank you my brother on the issues
of litigation, in Uganda disability movement we have tried that, also we have an organisation
in Uganda for persons with disability for lawyers, their mandate is to support people
with disabilities in legal cases, legal issues, that is their mandate. We have tried to file a public litigation
case on the issue of accessibility in the courts of law in Uganda. It was judged, but
although the judgement was not in favour of us, because the judge thought that maybe they
could sort it out, outside the court, you get
the point. (Inaudible), but that brings up the cause,
sometimes the judges do not understood the access issue and the rights issue. But besides
the DPOs, in Uganda we have, (inaudible), established since 1998, it has come to pass
in the last couple of months and they want to combine with us, certifying legal cases
on accessibility. The first information, they want us to do
auditing of several places of Kampala, the capital of Uganda, then they work together
with them and file cases to sue those public places which are not accessible. So there
is a green light where we are going. We are going to start suing people whose place is
not accessible. Especially when the Building Control Act comes into full force, which it
will, so we are looking forward towards that. We are just counting on our fingers for time
to elapse, thank you so much. CHAIR: Thank you. John? And then Yeni has
also a response. MR WODATCH: In the US the issues that you’re
talking about, from guardianship issues, supported decision making, substituted decision making,
informed consent, all of those issues are a matter of state law, and we have 50 states
in the US. Fortunately we don’t have 50 approaches to this, we have about three approaches and
they have been radically changing over the past 20 years. The most progressive states are really very
close to what the standards are in the CRPD, although we have not ratified the CRPD, the
moving force in the US is the Americans with Disabilities Act and litigation that’s moving
forward. But it’s more been a matter of the disability community working with state legislatures
and advancing the cause, and also moving towards limiting guardianship, we have the same history
that a lot of your countries did, of relying on guardianship, especially for people with
intellectual disabilities or people with psychosocial disabilities. We have moved away from that, as the default
mechanism. But we still have it in about a third of our states. But the safeguards provisions
that we were talking about earlier today that are in the CRPD are followed very closely
in the US, because you can’t have even a limited guardianship in the US without it being done
by a court, that requires periodic review and that requires a number of safeguards. But it is still there and it is still not
at the level that we would expect it to be if anyone who is ratifying the CRPD and following
it forward. MS DAMAYANTI: I’d like to share a bit about
our experience in doing the judicial review to the constitutional court. We did have litigation team, led by lawyers
from Jakarta Legal Aid Foundation, and also advisory from other legal aid organisations. Our experience is that it is very important
to draw up your case very carefully and prepare your witness very carefully as well. For the issue of psyche social disability
because this is concerning the right to vote of persons with psychosocial disability, we
had to have a psychiatrist among our witnesses, even though we do not really like to, because
it’s very medical model. But we have to be very pragmatic in the current situation, in
which the judge wants to hear the explanation from the psychiatrist. What is important is that we chose a psychiatrist
who is really into the right to choose for persons with psychosocial disability which
is not many, in Indonesia I only have one or two psychiatrists who have this view, and
to make sure that the psychiatrist is following your lead. And during the witness testimonies I noticed
that the judges are very interested in hearing the cases, and it is really new for them and
they are quite familiar with the issue of disabilities, but for the issue of psychosocial
disabilities, it’s really something new to them, so we really have to educate them about
this. We now have new Disability Act with a lot
of sanctions in it just passed a couple of months ago, three months ago. Then in the
future we really need to exercise the law and yeah, let’s see how is it going.
CHAIR: Thank you, are there any other questions?>>I wanted to ask you about something you
didn’t talk about in detail at all, maybe you could say a few more words about the practice
of shackling? I read an article about this and the work there, I thought it was very
informative and I don’t think many people are aware of this practice in the world, and
if you could explain it a little bit to people who have never heard of this concept?
MS DAMAYANTI: Well in Indonesia, it’s not only Indonesia but many places in South East
Asia, maybe in Laos, Vietnam, there is a practice of shackling people, or physically restraining
persons with psychosocial disability, I have some pictures here, which is actually physically
chaining a person to a place, something like this. This is in sheltered homes, run by institutions
where families send persons with psychosocial disabilities to this place. There is several types of shackling, one is
by tying the legs to the chain, with chains. Another one, I don’t know if there is a picture
here, but putting the legs between two wooden logs and there is another practice of putting
them inside cells, like this one, or cells like that one. It’s very common practice in Indonesia and
even the Office of Social Affairs often send the homeless persons with mental illness to
such facilities. Yeah, this is all of the horrible stuff you can see here. When people are shackling, they can be there
for a long, long time here. It means that they stay there permanently. They sleep there,
eat there, going to the toilet there, urinating there, defecating there, for years, sometimes
15 years in some cases. Sometimes in the form of goat shed, sometimes
outside of the house, I met a young man 19 years old who is chained to a tree by a paddy
field, outside, without any covering at all, for two years already he is there. And I asked
how did he eat? And the villagers say sometimes they send some food there. So chained there, naked without any clothes
for two years, without any covering, no roof, no walls. So yeah, that kind of practice is
happening. Also I know a woman who has been put in goat
shack for years, unfortunately this place is quite far from the house, so during the
night some villagers can come, you know, and rapes her. When she complained about that
nobody believed, until she was pregnant and gave birth to not only one baby, but two babies.
And the babies were immediately taken away from her. We are now doing a campaign to stop this practice
in Indonesia, but we can not really accuse the families, because there is no support
for them at all, no information, no education, and no support be it financial support, be
it social support, or medical support whatsoever. It is from my point of view, it is the whole
government responsibility, and this is neglect by the government, is a human rights violation.
So we are working with several Ministries in Indonesia with your help, thank you, in
trying to stop this programme and there is a campaign started by Ministry of Social Affairs
to stop this practice, but we really have to work really hard. Because it happened in two places, one is
in the houses of people, villagers and one is in institutions, so there are two approaches
with this. If it’s in the institution the solution is a bit straightforward because
we can just say to the Ministry of Social Affairs, look you are violating the law you
have to stop the practice. But if it’s conducted in individual houses, we need to make sure
that there is support available for the families. CHAIR: Thank you Yeni, we’re now at the end
of this session, and I really appreciate all the speakers and also all of your engagement.
There is next, from 4 to 5, small group break out sessions. As I said in the morning, one
of the groups I think group number 2 has been subdivided into two groups so please check
the list to see which small group you’re in, I look forward to smaller conversations about
how we take these issues forward all around the world.

One thought on “CDLP16 Uganda: The Campaign for Accessibility Legislation

  • Hafiswah Namirembe Post author

    It was an excellent presentation E.D. You have made DPODs, PWDs and Uganda for her flag proud of you.

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