Focus less on grades, more on accepting differences: President of Disabled People's Association

Focus less on grades, more on accepting differences: President of Disabled People's Association

Mr Nicholas Aw has Tourette's Syndrome from childhood, and he goes on 938LIVE's On The Record to share his experiences in dealing with the condition, public perception, and educating people from young on how to accept people with disabilities.

SINGAPORE: As President of the Disabled People's Association, Mr Nicholas Aw has made advocacy for the rights of persons with disabilities his life’s work.

Casting his eye on the current 2012-2016 Enabling Masterplan, he said that while much has been done to meet many of the basic needs of persons with disabilities, more still needs to be done, to raise levels of acceptance in Singapore society. His next goal? To start young, and to make disability awareness education compulsory in schools.

He is an advocate for those with disabilities, but he carries with him his own condition. Mr Aw has Tourette’s Syndrome, a neurological disorder characterised by repetitive, involuntary movements and vocalisations, including eye blinking, head jerking and awkward mouth movements.

He suffered with it through childhood, only to discover the condition he is suffering at the age of 27. Although the condition never held him back in school, the 50-year-old lawyer still gets made fun of by strangers.

He went “On the Record” with Bharati Jagdish about this and his own challenges growing up.

Nicholas Aw: I think the one word that I can use to describe it is “painful”, because my parents didn't understand me and they thought I was possessed. We went to see a lot of doctors. We went to see the priest, temple mediums, and all kinds of medical professionals, and they didn't know what was wrong.

Some said it was a bad habit, so they would say: “Stop it.” My parents would get upset with me because they thought I was trying to be funny, so I actually got punished for it. I was made to feel very low about myself because I didn't know what was wrong and I really thought I was just possessed. It was tough because in school, kids tended to make fun of me. They didn't know what was wrong, and they would say unkind things to me.

Bharati Jagdish: Do you remember some of those things?

Aw: Not really. All I remember was that I was made fun of and laughed at, and sometimes when I went out shopping, or to church, people would just point at me and they stared, laughed or they would mimic me, or they’d make some sounds. So that was hurtful, and I think my parents felt very upset as well. They felt embarrassed for me and also, perhaps, for themselves.

Bharati: But they never hid you from the world.

Aw: No. Over the years, it just continued. My parents have been there for me all this time. They were the old-school parents. They don't show that they care through hugs or telling you. They'll just do things for you. Especially my father. He has since passed on, but whenever I needed help to do something, he was always there.

Even after I got married, let's say the pipe in my bathroom burst, he would come to my house and would fix the pipe. I really appreciate that. My mother did tell me once that no matter how old I am, I'll always be her son, so I guess she is protective, and she accepts that I have this condition. But she'll just be there for me, so for that, I'm appreciative.

Bharati: You grew up not knowing what condition you had. You’ve said you only found out at the age of 27.

Aw: When I was in London, I met a doctor who told me about this condition. And at first I felt there was some hope. There's a name to this condition, and there may be a cure. But when I went to see him, he said there's no cure. It's something that you just have to control with medication.

Bharati: You are on medication now?

Aw: Yes. But I haven't seen a doctor for decades. The funny thing is that I've never been officially diagnosed with this condition.

Bharati: Why not?

Aw: Well, because every time I go see a doctor, they say they don't know what's wrong. The medicines they prescribe are not helpful, and I end up being very frustrated.

Bharati: You mean doctors in Singapore don't know what Tourette's Syndrome is?

Aw: They do, but every case of Tourette's is dealt with differently. Some are dealt with certain medicines. Some are better dealt with other medicines. And Tourette's can be quite complex because it's also inter-related with OCD (Obsessive–Compulsive Disorder) and ADHD (Attention Deficit Hyperactivity Disorder).

So some of us have got a mixture of all this. Some have more, some have less, some have more vocal tics. Different people react differently to medicines, so what may be good for you may not be good for me.

Bharati: If you haven’t been officially diagnosed, and haven’t seen a doctor for decades, how do you get medication?

Aw: Through friends who are doctors, they help me get the prescription. I went to see a doctor many years ago, and he suggested certain medications. And I also went to do research, so based on that, I went to experiment on myself.

Bharati: Why do you do it this way? It sounds as if you don't trust the medical fraternity to be able to diagnose you and medicate you accurately, even today.

Aw: I think you're quite right. They don’t even know what's wrong with me. They tried to hypnotise me, tried to ...

Bharati: But that was many years ago. Surely, doctors today are different.

Aw: I spoke to several doctors. They said there's no new development. So after asking for years and years, you kind of forget it and move on. I went to a school gathering a few years ago, and my school mate saw me, and he said: "What's wrong with you?"

So even after all these years, they thought: "He's trying to be funny."

And I think, forget it, no point.


LIVING WITH SOMEONE WITH A DISABILITY

Bharati: Did you have problems making friends as you were growing up?

Aw: Surprisingly no, but there was the occasional person who didn't want to be my friend because they thought I was weird. But my friends actually tell me that they see past my condition. They don't really notice it.

But the sad thing is, they never asked me what's wrong. I would have felt more comfortable if they asked: "Why do you do this? Is this something that you can share with us?" Then I won't have to think: "Do they accept me because they pity me, or they find me interesting?"

Bharati: Why do you think they never asked what was wrong?

Aw: I did ask one of my friends and she said: "I just never thought of asking you, I just accepted you as you are."

Bharati: To what extent do you think some of it has to do with the possibility that they just don’t want to hurt your feelings. They're trying to be polite. I think even well-meaning people sometimes are unsure about how to conduct themselves. They may want to know more, and are capable of politely asking. But they worry it would come off as offensive or make you self-conscious. What is the approach that able people should have?

Aw: That's true. I admit it is not easy, but I think the most important thing is we live in a society whereby we are aware that there are many people out there who have different abilities and disabilities.

Unlike in the 80s or 90s, or 70s, where people were ignorant or were not aware, we are now in a world where technology and information is so readily available. Parents today are very aware that things like autism, Asperger’s Syndrome, ADHD exist, so if they think their kids have some inclinations towards these conditions, they should have their child diagnosed.

For people who are not aware, they should be more sensitive and not pass judgement. They should be more sensitive. If you see a mother trying to control a child who's throwing a tantrum, what do you do? Do you say: "Oh he's a spoilt child." You do not know what the mother is going through. The child may be having a fit over something. There are a lot of things we are not aware of.

I think the first thing you can do is to ask the person you think has a disability: "Hey, please forgive me if I'm being too forward, but I noticed that you're doing this. Is there something that you want to share with me? Can I help?"

Most people when they hear this, may or may not be receptive. Some will say: “Go away.” Some will say: "Yeah, my child has got autism." So, not everyone will react the same way, but I think that the best approach is to be polite and to be sensitive, and to ask whether you can be helpful.

I was at a bar a few months ago and the staff were laughing, and I was a bit irritated. So when they came to me and they started making faces at me, I said to them: "Don't you understand that I have a condition?" And they were all stunned. So I showed them a video of what Tourette's is.

Bharati: These are adults?

Aw: Yes and they were teasing. Good Lord. I had to deal with this when I was young, and I still have to deal with it today. So, it's amazing.

Bharati: Amazingly unfortunate.

Aw: Well, I've seen all sorts in my five decades. Nothing fazes me anymore. I guess maybe for someone who's older, I don't get so bothered anymore.

I think it's ignorance, and also because probably the parents never taught them about such things, and I don't think it's wrong or bad that they weren't taught, because if you don't know what it is, how can you teach your child or your friends about it? So that's why awareness is so important. You need to be aware of certain things, before you can impart the knowledge down to your family.

STEPPING OUT OF THE SHADOWS

Bharati: We’ll talk more about education in a moment. Now, normally Nicholas, my “On The Record” interviews are recorded on camera as well, and we put up snippets of the video on our online platform. But you said you would not like this to be recorded. I respect your decision and so today, we're not recording this interview on video. But I did ask you why, and you said it's because your condition has worsened since we last met a few years ago.

Aw: That's correct.

Bharati: And you said it's painful to watch.

Aw: Yes.

Bharati: Are you ashamed?

Aw: I'm not ashamed. It’s just that when I watch myself with the condition, I feel pain for my friends who have to watch it. I think about my mother and how she’ll have to watch her son do this. And I feel that people may talk to her and say: "Hey, I saw your son and he was doing this."

So it's not so much for myself, even though I may feel a bit uncomfortable. But I also think about my son, that when he grows up, because all these things will be on the Internet, he just has to Google "Nicholas Aw" and he'll see papa, and he'll be like: "This is my dad."

Bharati: But your son knows you. Why do you fear that he'll be embarrassed or uneasy?

Aw: Well, maybe because I think of when I was younger, my parents used to be embarrassed for me. They were embarrassed that I had this condition. Maybe I'm being too protective, but I just don't want him to go to school and then his friends will go: "Hey, your papa is like that." And then he'll be bullied, or he'll come back and cry and say: "Hey, papa why you like that?"

Maybe I think too much.

Bharati: Would you believe it if I told you I'm not feeling uneasy at all watching you speak to me today?

Aw: Thank you. The funny thing is all my friends tell me the same thing. But, when I see myself on video, it's really not a very nice experience.

Bharati: If you’re uncomfortable and you think your son will be uncomfortable, how can others learn to accept such conditions, especially since you seem unwilling to expose them to it? If your objective is to gain acceptance of people with unusual conditions such as yourself, people with other disabilities, shouldn't society as a whole be exposed to the harsh realities of a condition like yours? If you are embarrassed by it and uncomfortable with it, how can you expect other people to become more comfortable with it?

Aw: I don't. Because I always take the point that if you're not comfortable, then move on. I mean honestly, if I saw someone with Tourette’s, I'll be like: “Whoa, what's wrong with him?” Because I have seen people with severe Tourette's, and I actually stare. I have the condition and I myself stare. So I don't blame people for staring. We’re all humans. We're afraid of the unknown.

And even with me, I know what it is. I'm still fearful. I'm fearful because I think: “That's me. That's how I am. I don't want my friends to see me like that.”

If they stare, fine, but if they point at you and they laugh at you, and they make unkind remarks, that's what's painful. I don't think it's wrong to stare per se, but it's what comes along with it. That’s the problem.

Bharati: Wouldn't hiding in the shadows merely perpetuate the stigma and the ignorance?

Aw: To be honest, I think no matter how much I expose myself on TV or video, I don't think it's going to change a lot because most people are very set in their ways about their perceptions. So, unless we get them when they're very young, to teach them about disabilities and conditions, I'm not confident about doing that.

Bharati: But you are a champion for these things. You talk about disability awareness. So I find it quite contradictory that you would say you don't think exposing the condition would make a difference. In your son’s case, for instance, if his friends ask about you, it could be a great opportunity for your son to actually tell his friends what condition you have, and what it's about.

Aw: Perhaps, perhaps. But maybe when he's older.

Bharati: How old is he now?

Aw: He’ll be four this year.


Bharati: Speaking generally though, there is a school of thought that disabilities need to be made more visible in order for that conversation to continue, in order for the stigma to be lifted and for ignorance to be addressed better.

Aw: Well, we really have to educate our schools to be able to teach the kids because I understand that schools have no fixed curriculum to teach disability awareness, and teachers often do not know where to start.

Bharati: You’ve said before that awareness and understanding is the key, even to determine whether such conditions can be disclosed and talked about more openly to gain acceptance. But to what extent is greater disclosure the key to education and awareness. Even in schools and the workplace?

Aw: I think that it is also a very personal thing for most people, because there are people who have embraced their condition. But I suspect the majority of people just want to be in the shadows. They don't want to be known to be somebody who has special needs. Because very often the question they have is, do I disclose my condition to the school, to my friends. If I disclose, what are the repercussions?

So I think it boils down to the individual, and I think that the majority of people are just afraid. I've disclosed so much about my life, but yet I feel afraid, because we are afraid of the unknown. Once in a while I go to social media and I read the things that people talk about, and I'm actually quite shocked at the comments some people make.

You just ask yourself, how can people think like that? But the reality is that there are all kinds of people out there. Everyone has their own ideas. So I think if the country wants to subscribe to something like awareness for people with disabilities, we all have to be on the same page.

MAINSTREAMING PEOPLE WITH DISABILITIES

Bharati: So let’s return to the subject of disability awareness training and teaching in schools. Clearly, you believe that’s the key to also giving disabled people the courage to step out. You’ve said that right now, teachers in school just go through one theoretical module in special needs education and it’s not enough.

Aw: I was in a school recently, and I asked the head of CCE (Character and Citizenship Education), and he said: "Oh, our teachers are all well-trained to recognise disabilities." Then, I met a teacher in the school compound later, and I asked him "So, I understand you have a boy in a wheelchair in your class."

He said: "Yes, and I have to educate the other students in my class about how to manage this.” And that's just for one boy with a physical disability. The boy had to wear diaper, he couldn't move his legs, he had a spinal condition.

So I asked him: "What about non-visible disabilities?" And he said: "Though we were trained one module in NIE, I will tell you that I won't know how to deal with it."

Bharati: So autism, for instance?

Aw: Exactly. And a lot has to do with the principals, the management of the schools to get the students, the teachers to educate the kids. But they need to be properly trained. Teachers are told they need to teach disability awareness as part of their Values in Action and the CCE curriculum.

Yet, many teachers do not know where to start, and do not have the resources or time to learn enough about this subject.

This can lead to an inconsistent, or even detrimental, messages about what inclusion is being taught to students. Teachers are just not prepared enough to be able to handle the situation in a way that they can feel comfortable with. And it can end up being a negative experience for both the teacher and the student with special needs.

Bharati: Better training would also mean more students with disabilities can be better integrated into mainstream schools, and able students can then learn to accept them better and even help them. Better exposure in that sense?

Aw: Yeah. We don't want to be sending all our kids with disabilities to special needs schools because once they're there, that's it. They'll find it hard to get a job. Their self-esteem will be reduced, and it's not going to be very positive for them. All children with disabilities should be included in the national education system to promote better understanding and a common bond between those with and without disabilities.

This has many benefits for those with and without disabilities as well as teachers. It is only when children with and without disabilities are taught together, in the same school, that the gap between those groups will be narrowed. Imagine if all students regardless of disabilities grow up, socialise and learn together.

They will be less likely to fear, or have misconceptions about the abilities of persons with disabilities. I am not saying that we are necessarily ready for inclusive education, but it is realistic to have specialised classrooms for those with severe disabilities within all mainstream schools.

Just being in the same environment day-in and day-out will increase the disability awareness of the youth of Singapore. At the very least, get the salaries of special needs teachers on par with the salaries of the teachers who are teaching in primary schools or secondary schools, because I understand that the special needs teachers’ salaries are pegged at the VWO (voluntary welfare organisation) level, and not MOE (Ministry of Education) levels.

So I think that if the teachers are encouraged to do this, and they have the money and resources, there can be a dedicated disability officer in every school. I'm not saying that every disability will be there, but at least many of them can be there. As a start, I think it's a good initiative if principals and the MOE can do this because this is the only way that you can create awareness whereby you understand it.

Bharati: When it comes to disability awareness education and being able to handle special needs children, some might say teachers already have quite a heavy load. What would education look like, taking into account all of these things?

Aw: Well, for one it will focus not so much on grades. All this emphasis on grades is very challenging for a child at a young age. I think that if we are able to provide aspects of each of these in the curriculum, whether on how to be a better person, how to deal with certain challenges, how to deal with friends, it would be good.

But these are not what is prescribed by the Education Ministry. Their syllabus is so different. We put the focus on grades or doing well.

I would like for their Character and Citizenship Education, to make it part of the examination, that they will be able to talk about inter-racial relations, relationships with parents, with people with disabilities. That'll be helpful.

I think if kids today are able to learn from a very young age that it is okay to be different, it is okay that a family has only one parent, it's okay that we are all different religions, then I think it'll be a good start for the school, and for kids to make it part of their DNA. By adulthood, your genetic makeup is such that you're already different.

Bharati: What’s really preventing all this from happening?

Aw: Resources. It's not about money. It's about training. It's about whether they have the people to support this. I think a lot of parliamentarians are keen about this, but it's whether the ministries are ready to support this.

Bharati: What do you think are the obstacles that are preventing the ministries from moving forward in supporting this?

Aw: I think that people love the status quo. It's like they think: “Not during my time. Do it when you take over.” Because it's too much work to do. People are afraid of challenges. People are just happy with the status quo.

Bharati: And you think this is what's happening within the establishment?

Aw: Prove me wrong I guess? We're in the second Enabling Masterplan and the second committee promised certain things with regard to amending the Compulsory Education Act.

Bharati: To clarify, the Committee said it would consider amending the Act to include kids with special needs, with the aim of including them under the Act by 2016.

Aw: That is correct. But, we've not heard anything to date. As of now, we are not aware of any such study being conducted or published.

PROTECTING THE DISABLED THROUGH LEGISLATION

Bharati: Considering this, what is the way forward in terms of working within these limitations, yet improving the situation?

Aw: I think first of all, we need to work together with the Government on things like disability legislation. For example, if nothing is done to protect people with disabilities, then what is the signal that they're sending to Singaporeans? That it's okay to go to a toilet for the disabled? That it's okay to park at the disabled lot just for 10 minutes because I'm in a rush?

Bharati: There are fines levied for that sort of thing, but you don't think they're effective. You've mentioned before that what they need to do is impose demerit points on people who park in the spaces meant for the disabled.

Aw: Yeah exactly. That's correct.

Bharati: Australia has a Disability Discrimination Act. And apparently under that, it's illegal in Australia to refuse a parent a job because he or she will need time off work to look after a child with a disability. So this covers the caregivers of disabled individuals as well. Is this what you're envisaging for Singapore as well?

Aw: I think it's too far ahead to envision that right now in Singapore. Education and employment are two issues that we have to really look at. Education to ensure that children with disabilities go to mainstream schools. There are a lot of things that could be done, like employment. No one should be discriminated because he's in a wheelchair, or because he's got Asperger’s Syndrome.

Bharati: If he or she can do the job, and is competent enough to do it, there shouldn't be a bias. Why do you think after all this time, the authorities here have not wanted to impose anti-discrimination legislation?

Aw: They're not ready. Yeah, I think they're not ready.

Bharati: Why not?

Aw: I don’t know. In fact recently I went to an event and I approached ministers. They just gave me a blank look like: “Yeah all right. Not again.” So, I think they see me as a pest. But I think there's only so much that we can do. Because if you keep prodding and prodding, they will just switch off. I know that they're working on it. We're trying to show them that we need this.

But for now, it's very hard because we could talk again and again about people making way for people in the MRT, the train. You know, I go to Vivocity once in a while and there's a lift that goes from the first floor to the second floor, and it's always crowded. For families with strollers and people with physical difficulties, it's very difficult to go up the escalator because it's so crowded, it's fast. So they try to use the lift. But the lifts are filled with able people, who are too lazy to climb up one flight of steps.

I take the MRT a fair bit, and each time I go by the lift, I see it filled to the brim with able people. The people in the wheelchairs have to wait outside for a long time.


Bharati: So it comes down to education doesn’t it? Even if we had legislation, there needs to be enforcement – and let’s face it, the authorities may not always be able to catch every wrongdoer. Why not get people to be more educated and socially conscious, instead of resorting to legislation. If we went back to your idea of compulsory disability awareness education, we might see changes in the next few years.

Aw: Yes, that is why we have all these campaigns. In the school there's going to be a campaign in the next half of the year. But you can tell someone to give way to someone in a wheelchair, you can tell someone to give way to a blind person in the lifts, or on the roads. The trouble is would the person who is hearing this, agree?

HOW THE MEDIA CAN HELP

Bharati: Aside from compulsory disability awareness education, I understand you feel there needs to be better and more mainstream coverage of disability or inclusive arts and sports events.

Aw: Well for example, before you even get there, how many events or news programmes do you see on TV that are friendly to people who can't hear? The only program that I know that has subtitles in English is the Channel 5 news. Apart from that, very few right?

At least in some programmes in some countries, they have sign language. So maybe it's the programmes or the decisions by the broadcasters, but with regards to events like the Olympics, it is only when disability events get the same kind of media coverage as mainstream sports events that people will start to get a better idea about what it is and that it is as important as those other sporting events.

For example, the ASEAN Para Games should get the same media coverage as the ASEAN Games. The Olympics and Paralympics should have the same TV times as each other. It's very sad that we have talent among people with disabilities, but it’s not shown. They do focus on the successful ones, like our swimmers, who have broken records. That's great, but how about the rest?

Events like the Purple Parade should get decent TV coverage considering it is one of the largest disability related events in Singapore. Giving media coverage to these events again sends a message that the public should know and support these celebrations.

Bharati: You have also brought up in the past the fact that in sports, able-bodied medalists in Singapore tend to be rewarded better than the disabled medalists.

Aw: It's because of sponsorship. There are no sponsors.

Bharati: So society needs to step up. Businesses need to step up. People with money generally need to step up?

Aw: But the trouble is, it’s because there is not enough coverage. Without coverage, there are no sponsors. So it's a vicious cycle.

Bharati: We talked earlier about conditions like autism. Some people have said that the treatment options tend to be very expensive as well. And that's the other issue - the ability of people with conditions, and people with disabilities to actually finance their own medical treatment.

Aw: The challenges are very great, because I know of parents who can afford to send their kids to private schools, those are the exceptional ones.

But for most parents, they send them to mainstream schools, or if they are lucky, they send them to a school whereby they are able to seek treatment or assistance. But there are not enough schools here. That's why I always say that perhaps it's good that they be integrated to mainstream schools as well. And that all the schools in Singapore take on the challenges of having such kids.

BEING NICHOLAS AW

Bharati: You mentioned how you bring up these issues constantly, and sometimes you feel that the authorities, or people in power may see you as a pest. Why do you continue doing what you do, in spite of it?

Aw: I've always believed that I should persevere in what I believe (in). Not to give up. So as long as I have the energy, I will keep at it, like an Energizer rabbit.

Bharati: What makes you, you? As a person growing up in those circumstances, how did you manage to still go through life, do relatively well in school, have a successful career and be an advocate?

Aw: Something that I always share with some close friends is that, if for one moment in life, I could just be normal, I would give up every material thing I have. Just for that one moment to know what it is like to be normal.

I prayed a lot and many years ago, I was involved in a musical called 'Joseph the Dreamer'. Joseph is a biblical character and he had 12 brothers, and they were all jealous of him because his father really loved him. So they sold him to slavery. But whenever he was down, he would fight and fight. He would persevere. He never gave up. So he became a role model for me when I was young.

Bharati: What's next in your own personal journey?

Aw: Well, I hope to spend more time with my son. He's growing up. Take him to soccer class, and things we can do together. I dread the day he will ask me why I make funny faces at him. But yeah, I got a lot of that when I was younger with my friend's kids, so I know what it's like. I'm just waiting for the day he does spit that out. I have to think of an answer.

Bharati: Why can't you tell him the truth? This is the condition ...

Aw: Yeah, yeah I plan to say that to him, but I think he'll be too young to understand what a condition is. I don't want to say that I'm sick, because it's not true. That'll be the easy way to say it.

Bharati: Do you feel you should maybe set a deadline for when you should tell him, instead of waiting for him to ask?

Aw: I don't know. See, that's the trouble. No one teaches you things like that.

How do you expect a parent to teach their child about disability, when they don't know how to deal with it?

Bharati: Even the parents who have conditions themselves may not know how.

Aw: So it'll help if we start tomorrow or today with our kids. Get them educated and aware, so that when they grow up, they'll have this thing in their DNA and hopefully from there, they'll be able to pass it down to their kids.

Bharati: How are you planning to learn how to do this better yourself?

Aw: I’ve never thought of it actually. But now that you have asked, I’ve got to think about it. Well, there’s a book that a parent sent me from Australia. Her name is Jessica Smith. She just sent me this book that she wrote that's available in Australia. It's a book about being different. So the book talks about Jessica going to school. Jessica has one arm, and she's a swimmer. So when she went to school, people laughed at her, asked her why she had one arm. And she felt very embarrassed and upset.

So the teacher explained to kids that everyone is different. Some of us have got curly hair, some have long hair, short hair, some are darker, some are lighter. Some have one arm, some have no arms, some have two arms. Some go on a wheelchair. But we are all the same. So in that way, the kids were able to accept each other. So I thought that was a very good start to teach kids about differences. Not just about disabilities, but also about race and physical features.

Bharati: What are you going to be doing in the next few years in order to hasten acceptance, in order to hasten things like the introduction of anti-discrimination laws?

Aw: Yeah, I hope to do this in my lifetime. But laws must be complemented by education. So I would like to continue to bring awareness to people, to society to make as much impact as we can. Because if we can persuade some people to do something, all it takes is just one organisation, one person, one school for it to be a ripple effect.

Because if let's say I start with a school, and the school does it, another school may say they want to do it too. So people will want to follow. So I don't have to move the whole world. I just have to move one person. And maybe the person is someone of influence. We can only hope.

Source: CNA/kk

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