Architects would also need to be sensitive and understand this topic.
In the context of Malaysia, what is the root cause of the problems that disabled and older persons are facing in Malaysia? The problem lies in disabled and older persons being side-lined and unable to participate in life, be it in public life, economic life, learning, or cultural life, due to the fact that the legislation that was supposed to empower disabled and older persons is discriminatory and segregational rather than anti-discriminatory. It is evident in the planning and implementation of the PwD Act 2008 that real changes were not forthcoming as the focus was on projects rather than solving the bigger problems and how the power is in the hands of the Government and not in the hands of Persons with Disabilities. This podcast explains exactly what that means. This is the PODCAST link for Part 1 included is the transcription of the podcast audio format. [Podcast episode available on Spotify, Google & Apple podcast].
Part 1
I would like to continue the discussion with regard to mainstreaming disability into the Sustainable Development Goals Agenda 2030 in Malaysia. Now, this is a precise and candid opinion with regard to the review of the Persons with Disabilities Act 2008 Malaysia. My explanation herewith is based on the opinion that we (disabled persons in Malaysia) need an anti-discrimination act, or a Disability Discrimination Act, similar to the one that the United Kingdom had in 1996. Of course, later on in the United Kingdom, they changed it to the Equality Act 2010. Now, the Disability Discrimination Act is 3 words while the anti-discrimination act is 2 words long. Now, the word ‘discrimination’ doesn’t sit well, in Malaysia for many, many years (and is argued still is a sensitive word to be used as it connotes ‘racial’ or ‘religious’ discrimination). Even the word ‘activist’, may seem like you’re against the Government and the long-held perception is, that you will be jailed or you’ll be penalized or brought to court if you were to openly disagree with the Government on many matters, and they will control what you’re going to say in public life. Now, I wish to argue on behalf of persons with disabilities, but obviously, not all persons with disabilities are going to agree with me because they have different opinions. I would like to say that having an anti-discrimination act at an appropriate time in the history of a nation would help the nation to sort out a lot of things, which an administrative act like the Persons with Disabilities Act 2008 is doing right now (in terms of the timeframe). There are opinions that you need just to tweak a bit and revise the PwD act 2008, and then you will resolve things with the other mechanisms, like SUHAKAM etc. The approach is in the interest of a low budget planning for the Government. On the other hand, what we want is the idea or the concept or something that is comprehensive and would resolve a lot of problems. Therefore by proposing the idea of an anti-discrimination act, all at once, you would have in place, a Commission, a Tribunal (redress mechanism), and the Harmonization of the Act with the Convention on the Rights of Persons with Disabilities (CRPD).
By wanting an anti-discrimination act to state what it says ‘on the tin’ (label), comparing to the tin’s label on the PwD Act 2008 is not anti-discrimination, we argue the case that the PwD Act 2008 is discriminatory. It would be dishonest to suggest that this Act is anti-discrimination, where it has not proven itself to be all these years. It does not seem to empower persons with disabilities as it suggested it would have. Since the Act has been enacted, there is no evidence at all that the clause in the Act to revise all the acts in the country to make those other acts anti-discrimination for disabled persons, like the Education Act, the Employment Act, the Streets, Drainage, and Building Act, for example. At the level of the Minister with the Council that level of discussion and debate had not been made, which makes this act somewhat redundant. On this alone we would suggest that the PwD Act 2008 is ‘toothless’ with no bite. From the very beginning, there were people who were involved in the draft of the act before it was enacted, wanted to have the Commission and a redress mechanism. The teeth was taken out so to speak, and not have any power, as it is arguably that the power does not lie with the person with disabilities council members, as the power lies with the Minister of Women, Family and Community Development. We know that disabled persons in Malaysia are facing discrimination at every level, housing, transportation, cultural life, access to education, employment, where so many sectors are not being resolved.
Therefore, the country needs a Disability Discrimination Act to sort out the problems with a proper Commission and Commisioner. Alternatively, a Royal Commission, appointed by the highest state, the Agong, in Malaysia. Now, the situation for disability rights are a mess, and as you know, it has become worse, compared to the last time, for example, there were not many requirements, on who can enter which university and what disability (disabled person) can apply or enter which university’s course. The Government tried to implement a system where limits are imposed on a disabled person’s compatibility to a particular university so that they can do ‘only’ this or that course. They’re not letting disabled persons choose whatever vocation they want in life. For those who has the right qualifications to go to universities, the Government is putting requirements that you must be of a certain ability (or disability) in order for you to do a course. As a physically disabled person who entered a local university and did architecture before in the 1980s, now I doubt that I could. Hence the worsening situation on disability rights in this country.
With regard to abuse of children with disabilities, we see the famous case of Bella ( a girl with Downs Syndrome) where the person who made the complaint is being subjected to harassment, because their name was out there in the media, the identity was not protected, and there is no Commission or a legal mechanism to protect them if they make a complaint. Therefore, we can only guess that a lot of other people out there know children with disabilities who have been abused but do not want to have their names be out in public or people don’t want to let themselves be scapegoated or vilified in public, because they complained about somebody else, who may retaliate legally or in other abusive means. So the point I’m trying to make is to solve the problem of our country, we need to have a Commissioner, a Disability Commissioner, with a proper office and have about 20 or more people right now invested in it by the Government. So again, we can resolve this way as we can’t have SUHAKAM because it is not a way to deal with it and SUHAKAM hasn’t proven that they could deal with this issue before.
There are too many issues, therefore the Disability Commissioner needs to do a lot of work and needs a lot of people to assist them when they go to different states as our country works with a Federal Constitution, and each state is governed in a way with laws that is pertaining to that particular state. You know that the uniform building bylaw 34 A under the Streets, Drainage and Building Act was gazetted by each state from the years 1991 to 94 and 1999 in Sarawak. Therefore, the state government is the one that will ask all authorities in that state to enforce the act, and if the act is not enforced, there will be a penalty enforced. If a developer does not comply with the exact requirements or standards in the implementation of the uniform building bylaw, they will need to be penalized. The question is: who is going to deal with the issue of penalties? By right, the person who is empowered to enforce the PwD Act 2008, has a clause that needs to review all the laws in the country, but it has not set out to do so or ever did since 2008. We assume that the Minister knows that there needs to be a lot of coordination and their ministry does not have the people to do the coordination work with the other sectors with the other ministries. So we are helping out Malaysia by suggesting a Disability Discrimination Act will resolve all problems, where the Commission and a redress mechanism would resolve the problems of the country, chiefly in making due diligence work.
And not giving a lot of case studies or a lot of case studies. One glaring thing that is happening under UBBL 34A is that a disabled person can enter, use the building, and exit. What it doesn’t say is that the interpretation when you said exit, it means that during an emergency, a disabled person can exit safely intact and not be disabled by being in that building, for example. Now, imagine that a lot of buildings that have been passed are certified by local authorities, which doesn’t suit or will not comply with this UBBL 34A in terms of emergency escape. That is a huge problem there right now. How are you going to rectify it? So, you know, in this country, we try to resolve a lot of things with consultants, but consultants themselves lack a lot of things. I can cite examples that I’ve heard, but I wouldn’t do it here. But the ones that I’ve cited, everyone knows about. So I will leave it there. I would like this podcast to be broadcast in my Talk Architecture podcast, and whoever does listen to it, and if you’re an architect. I’ve talked about UBBL 34A and it is in your interest to learn about universal design, to learn about this law, and also to understand the Malaysian standards, MS 1184 and 1183 because this is the contentious thing that we have in this country with regard to persons with disabilities.
Part 2 [PODCAST LINK]
A continuing discussion on the anti-discrimination act relating to disability or, as someone advised me to go for the Disability Discrimination Act because we do not want misunderstanding with regard to whether anti-discrimination relates to race or religion in the context of Malaysia. So we are going to go straight to the point and talk about the Disability Discrimination Act with reference to the DDA 1996 of the United Kingdom. The reason why I am referring to that particular act is because I did a PhD thesis based on England and Wales and I had to learn about that Act. And while I was there in the year 2002, the Act was being deployed. It was interesting that under that Act, there is a code of practices that was done with regard to the Act, which is particular to certain sectors in the UK context. One is on Education, and one is on Goods and Services. And one is on Transportation. I think I haven’t left anything out yet. But there are other issues, of course, other statements of the clauses into Acts. And one of the things that was important was the establishment of the Disability Commissioner, under the disability commission. Together with that act, the Disability Commissioner could be approached, if you are discriminated against, since you’re a disabled person, and you were discriminated against due to education, goods and services, and transportation. So for these first two, the cut-off date was providers with regard to education and the goods and services, they need to get it sorted by the year 2005. Whereby, transport providers, they need to get themselves sorted with reasonable accommodation as one of those terms by the year 2017. So it’s complicated, for example, for the code of practice on transportation for London Transport to get themselves sorted. So some of these underground stations, which were coal mining tracks, several hundreds of feet below ground, they were quite impossible to get lifts down there. So what they did London Transport did was make sure the journey is seamless for the person who is using a wheelchair where some of the journeys can be done by buses. So they have accepted that travel to the middle of London City Centre takes about an hour or so from the suburbs, which is a common thing and there is not much discrepancy between the travel of an able-bodied person and a person using a wheelchair. Of course, there are other compensations, such as some sort of standardized costs to use taxis. And the taxi cabs were made accessible. Not necessarily all but all the buses were made accessible eventually, as you can see the phasing out of the old buses that you hop in and hop out. So you have buses that have flipped down ramps for people to board and disembark. So, in this regard, you can see that the United Kingdom wanted to resolve a lot of things with the Disability Discrimination Act. And later in 2010, they reverted to the Equality Act. So that is pertinent to that country.
But what about our country Malaysia? What do we do? We see that a Commissioner would be the person or the DDA office, a strong office that would take care of multi-sectoral coordination between the different ministries because it’s not happening with the PWD Council (Malaysia) now that there we haven’t started revising the different other acts, nothing to do with the administrative act, but to revise other acts. Is it because the power of the Minister is not strong enough? So when we think about this, can we actually also, research this more, suggesting that the power of the Women Family and Community Development power is not strong enough, or I’m saying that the Council is not strong enough to influence the Minister to take charge, and getting other ministries to solve the problems. So who is going to do the job, as there is no dedicated office to do that. That Ministry has its hands full with welfare issues, but for rights for persons with disabilities, it’s something that is difficult for them to partake in. Now we know for a fact that in 2018, our group Harappan OKU was approached by the Ministry of Women Family and Community Development to provide evidence or data regarding the PwD Act, or case studies so that they would be informed. Now, wouldn’t that be the ministry that has enough resources to do that, having the legal department, the policymakers, and so on to do that? Now, this indicates that the Ministry does not have the resources, the Ministry does not know where to start, or the Ministry is not engaging enough with a person with disabilities. I didn’t know that in 2018, the Minister or the Deputy Minister, sat with many different organizations to find out the problems but unfortunately, that time, it was a short term for that particular political party by 2020. So too bad and now do we start all over again.
So, we do find it strange that the Minister appointed 10 member members to the PWD Council, where eight people are non-disabled persons, it is against the spirit of the PwD Act and is against the spirit of “Nothing about us without us”, with regard to the disability movement. So it is disconcerting that not enough representation from disabled persons is in the council. On top of that, as I said, there seems to be a certain amount of gatekeeping in terms of controlling what is to be discussed. And I will since I’m not saying only this political party, I’m saying from the very beginning in 2008. Until now, all the ministers of the Women Family and Community Development Ministry do not want to review the uniform building bylaw 34A under the Streets, Building and Drainage Act to make it much more powerful by having a penalty clause plus did not engage with others such as the Employment and Education Act. Of course, you can if you are dealing with Special Education, but in education there are disabled persons under the Education Act per se and not under special education. So under the Higher Education Act and other different acts that are in the country, Transportation Act, Streets, Building and Drainage Act, Town and Country Planning Act etc. There are a lot of acts that need to be addressed so that the rights of persons with disabilities and older persons can be protected and upheld.
We have a lot of acts that just need to be revised accordingly. And most glaringly, the word “disabled person” is not in the Federal Constitution. So that is very, very glaring, and who’s going to do that, who’s going to make the effort to deal with all this. So, it is very, very clear that you need an independent Commissioner with a good-sized office to deal with it. Because there is an aging population coming up, the aging population, out of the number of 17% of the population is going to be 65 years and above, where 70% are going to be disabled persons. And, you know, this aging population, one needs to have so many things in place because we need to be prepared when we are of a certain age when we don’t have any choice, but we will be disabled. So physically or sensorily one really can go blind, deaf or a lot of ailments are going to come up when you reach a certain age. So all these things added up together make sense for us to have a Disability Discrimination Act.
Now, what is the Disability Discrimination Act in the context of Malaysia? Let us look at the UK. The one that I know what to talk about when it happened when it was established DDA in 1996. In the UK, all sorts of manner of service providers, transport providers, like private restaurants and shops and malls, and in every development, everybody got their act together, because they were certainly afraid to be penalized by the Disability Commissioner. Persons with disabilities if they cannot access the right to access a university, they cannot access a classroom, for example, they could complain and this establishment will be penalized. So they were aware and they do not want to be penalized these establishments. So for a DDA, the power of the DDA is to penalize people for not providing access for persons with disabilities and need to have reasonable adjustment because you need to inform the public, that persons with disabilities cannot do this (in the case of historic buildings and conservation laws). So alternatively, they have to accommodate disabled persons, like what we had mentioned for transportation with the buses. I was in university in 2002, the DDA started for education. And they had a Disability Liaison Officer, and I was supposed to register like everybody else in a very inaccessible place. However, I was helped by the supervisor and the Disability Liaison Officer to sort out my registration easily. Not only that, it’s not to do just with the registration, in the beginning, to do with the classrooms, but also to get access by, using the blue badge to access using a car, and access healthcare when I was doing my PhD there, and when graduation time towards the end there are career guidance, and so on. So anyone could apply for any course. And the university needs to be ready to assist that disabled person to do the course accordingly. So unless it’s terribly impossible, you would do it by suggestion, you won’t like to totally deny a disabled person to do a course.
So there should be reasonable adjustments. So in Malaysia, reasonable adjustment is up to whether the employer wants to make reasonable adjustments for the employee in all situations. So we have in Malaysian country laws, they haven’t included disabled persons in these laws. And still, there are a lot of laws that need to be rectified. However disabled persons are not mentioned in many of the laws. And why is that and who needs to do that? That’s where we go for A Disability Discrimination Act with a Disability Commission, a coordinator and able to penalize, where a person who goes into different ministries talks to different Ministry officials goes down to the ground, talks to disabled person on the ground, do the job necessary to get things done. So to remind all the ministries, the government servants, that due diligence, the functions and the job with regard to anti-discrimination, to do practices that are not discriminatory for disabled persons.
So this is an explanation on a further explanation on the part, continued from part one, which I hope that you get a bit of more understanding about what’s happening right now in Malaysia and what is very urgently needs to be done because they are revising the PWD act to one 2008 right now and is going to be tabled next year in 2024. Is it another tweaking of the administrative act? What are they gonna tweak? When they talk about punitive measures? What does it mean? We all understand that there are many, many other acts and they did not do that they did not deal with that. What is to say that they will deal with it for another 10 years? Are we gonna wait for another 10 years before you want to call out for a Disability Discrimination Act? So okay, are you willing to work and wait another 10 years, some people in this country who are as we are talking right now being abused, being raped, being maimed, there are people in this country who are not able to talk like you and me? They are hidden? They are away from sight, they are being discriminated against right now. In another 10 years you have multiple more people, what are we going to do now? So talking about the worst-case scenario of people who are not visible, people who are visible are subjected to bullying and harassment based on their disability, and disabled persons are discriminated against openly. So, you know, when are we going to start to rectify it properly, properly in the right way, with the legislation, the strong legislation, not one with toothless legislation like the one we have, will the next one be as Toothless as the previous one? How Biting is it going to be? How strong is this legislation going to be proposed in Parliament next year?
When I was in the council from 2008 to 2012, I tried to discuss issues pertaining to higher education to have the universal design, currently an elective, to be a compulsory course, for the first degree (in architecture) rather than the master level, so that everyone needs to go through a universal design course, for an architect, you can do it for the rest of the built environment professionals as well. I tried to talk to the institution that is that could change things that could make this happen. But they refuse. They said to make it an option. They don’t see disabled persons, or the disabled person’s issues, or the elderly person’s issues as important issues. They look at architecture differently. So what I’m trying to say is that I didn’t have any power, no power is at the back of me. I’m just talking to them. I don’t know what to do when I talk to them, I don’t know how is it going to be done? So these are the things you know, what I’m saying about this is that the Minister will accommodate the situation where certain things are to be needed to be amended or needed to be revised in this country. But there was no discussion of that, as it is all about pilot projects and low-hanging fruits. Finishing a publication is about the best that was done, and was the registration of vehicles that never got resolved, during the tenure of that particular minister went on and on. And I don’t think that is ever been resolved.
So the point I’m trying to make is that there is not focus. It is not helping Persons with Disabilities Act 2008. How would you think the 2024 one will be better. Get one that is proper Disability Discrimination Act, get it down, and ask for it. Shout for it, get attention to it.
Tell the Government that we do not want an act that is still discriminating against persons with disabilities. We want an anti-discrimination act. We want a Disability Discrimination Act, and we want the tribunal redress mechanism, the Disability Commission, and we want everybody to be protected under the act.
Whether they live in houses and housing environments, or on university campuses, we want reasonable adjustments. We want everything sorted so that disabled persons can make complaints and other people can make complaints when they see abuse, harassment, and bullying of disabled persons. And these people will be anonymously protected under the Act.
Life is a Design Thesis 