Disability Inclusive Development for COVID-19 Recovery

Poster for IDEP2021 Conference, Plenary 2. Multidimensional Povery & Inclusive Development. 
Yana Karim. "Voice of the Community"
Co-Founder, Boleh Space

Keynote Speech at International Day for Eradication of Poverty 2021, IDEP2021.
Yana Karim, Boleh Space Co-Founder.
15th October 2021.

Assamualaikum wa rahmatullahi wa barakatuh.

Thank you Puan Shareen and Yayasan Sejahtera for the opportunity to be here today. Distinguished panelists. Dr Haniza, Dr Kenneth. Honourable guests. 

I never imagined I would be here today. Advocating not just for myself, for my friends, for all persons with disabilities (PWDs) in Malaysia. Last year at the beginning of the pandemic, my friends and I were on twitter to share our lived experiences as PWDs in Malaysia. The inaccessibilities, the stigma, the stares, the work applications that never received a reply back, the ableist comments at work or Uni. For some of us, our only connection to fellow PWDs is on Twitter. 

When COVID-19 happened, we start seeing how suddenly the whole world can work from home, including for some with flexible hours. For us who have no access to public transport we look at this in surprise and anger, because we have been asking for this for years. Why is it suddenly accepted now? My friends with rare disease who are still waiting for a medical breakthrough meanwhile read all the funding suddenly made available for research for a cure or vaccine for COVID-19. There were discussions of who should be vaccinated first. We started seeing ableist comments that the elderly and PWDs shouldn't be vaccinated because we just stay at home. That comment particularly hurts. We stayed at home not by choice, but because our cities/villages/our own house are inaccessible. 

We became a Twitter Message group initiated by Nara Shahab to start combining our voice. In June 2020, we started posting using the twitter handle ‘bolehspace’ to raise awareness on disability issues using the hashtag #OKUMalaysia. Soon, fellow Malaysian PWDs started using the hashtag too. One year later, Boleh Space is now running as a registered LLP with the original co-founders Nara, Yana Karim and Nasrul, who joined us in September 2020, supported by some of the original members of the group as well as new disabled friends and allies. 

Some of Boleh Space members joined training programs to empower ourselves, and in turn empower other PWDs. Several of us completed Disability Equality Training by the late Peter Tan, online Activist Universal Design Program by Dr. Naziaty Mohd Yaacob, Empowerment for Digital Accessibility and Strategic Advocacy Training (NCBM & UNESCAP), and I myself am learning Mobile Journalism (NGO Hub & Internews) and was part of Suhakam Focus Group Discussions and the recent Malaysian Urban Forum.

The COVID-19 pandemic has exposed the weaknesses of our social protection, the healthcare system, and inequality in Malaysia. None feel it as much as our poor. And our disabled community. And other marginalised communities. 
Three people huddled under a ripped umbrella in heavy rain. One is a lady wearing hijab, she is blind and holds a white cane. The person holding the umbrella does not show a visible disability. There's a child seated in a wheelchair. It's in grey scale except for blue accents on the umbrella, the wheelchair back and arm rests as well as the grip of the white cane. The blue, ripped umbrella has "OKU Act 2008" in white on it.
Art by disabled artist, Fared, meant to signify the lack protection of the PWD ACT 2008 for our PWDs in Malaysia.
For our blind and visually impaired friends, this artwork is by a disabled artist, Fared. It shows three people huddled under a ripped umbrella in heavy rain. One is a lady wearing hijab, she is blind and holds a white cane. The person holding the umbrella does not show a visible disability. There's a child seated in a wheelchair. It's in grey scale except for blue accents on the umbrella, the wheelchair back and arm rests as well as the grip of the white cane. The blue, ripped umbrella has "OKU Act 2008" in white on it. This art is meant to signify the lack of protection of the PWD ACT 2008 for our PWDs in Malaysia.

Last year, the theme for International Day of Persons with Disabilities for Malaysia was "Hari OKU: OKU Mendepani Perubahan." If you see the organisational structure of Ministry of Women, Family and Community Development, you will see five departments. Department of PWD Development (JPOKU) is below one of these departments, Department of Welfare (JKM). It's all depending on JKM. Although JKM has been doing an excellent job (sarcasm), but we see now there's some issues, because all the planning does not involve us. The decision (making) does not involve us. So, how is it "OKU Mendepani Perubahan" if JPOKU isn't even led by an OKU. 

Disability Inclusion addresses the meaningful participation of persons with disabilities, the promotion of their rights, and the consideration of disability-related perspectives in compliance with the Convention on the Rights of Persons with Disabilities (CRPD).

Let's talk about the existing COVID-19 Recovery Aid for OKU. When we talk about BPR (Bantuan Prihatin Rakyat) list. Is it BPR now, because the name keeps changing. BPR is specifically said for single OKU aged 18 and above. But how about families with OKU kids, are they covered by BPR? And then, if you're on the BPR list, you're eligible for mySalam, PekaB40 which is for non-communicable diseases and Geran Khas Prihatin which is funding for businesses, as well as Jaringan Prihatin. When we look at all these possibilities you can get from BPR, when you're on the BPR List for B40, if you receive Geran Khas Prihatin, you won't receive, you will be excluded from the B40 list, you will be excluded from BPR for OKU. It's amazing how just because you're getting GKP...you can get help for your business, but you can't get help for yourself. 

It's inter-related. You can not separate it. And then, when you have Jaringan Prihatin, but you're not on the BPR list, how are you supposed to get help for mobile devices for you.  And also about Protege, where employers get tax rebates when they hire disabled people. But, the PWDs themselves are hired as trainees, they're not workers. They're trainees on contract. They're working during a pandemic. Are they allowed leave? Are they allowed any medical coverage? Are they receiving any SOCSO or EPF? Not all are covered by SOCSO. Some are covered by EPF. And then, when you look at Protege, you know that, ok, there's a contract. This person has to start work from a certain time to a certain time. But, are they protected by Employment Act? (There's no Anti-Discrimination protection for PWDs in Employment Act) If there's any problems, who can they report to? There were so many problems with Protege where employees, disabled employees, were forced to work on weekends, and they were not even getting paid for all the overtime. I can talk more about this but I won't because it will take the whole day.

Building back better. You need to include us when you plan for COVID-19 recovery. And we need to remember, all the lives lost due to COVID-19. Is our healthcare system enough? And are you actually including PWDs in your decisions. 

When you look at MySejahtera, there were not enough support in the helpdesk for disabled people. Even for vaccination, most of us, disabled people with organisations, they had to plan their own PPVs, "Pusat Pemberian Vaksin". That's just not right. Why did they have to step up and do our own? We're part of the system. Why did it take so long for people to include PWDs in the Phase 2 vaccination? 

When we talk about certs, the vaccine certs, if you're a dependent, and if you have multiple caregivers, your digital cert is stuck on only one caregiver. Is that logical? It's not. What if a person who already owns his own vaccination cert on his own MySejahtera suddenly needs to become a dependent? This is life right, you can become disabled any time, you can be a dependent any time. And then how do you translate that into your digital cert. Is that possible? It's not right now. And recently our Orang Asli has been complaining that, when they don't have smartphones, they don't have digital certs. So they're stuck with the papers. And that handwritten cards, are not accepted at most places. They still want the digital certs. That's inequality. 

Let's look at education. On education, we need to be more universal, we need to use Universal Design Learning, and we need to train our Special Education teachers better. On housing, we need to use Universal Design. Implement it. Access Audit it. Housing should be something that we stay in, from birth until death. Somewhere that you can live comfortably. 

OK, let's look at this video about information. 

Information and Communication for everyone

Concluding remarks

I'd like to congratulate our YAB Prime Minister Datuk Seri Ismail Sabri for Malaysia's success in taking a seat in the UN Human Rights Council. Let's start by facilitating PWDs rights by reviewing PWD Act, adding enforcements and penalties. Let's also realise our rights to autonomy and in decision making. 

At the same time, we want to challenge everyone here in management level to ask your HR how many of your employees are disabled. Does it reach 1%. If it does, can you try to reach 5% next? If you reached 1%, I would love to know, how you did it, how long it took for you to do it, because Malaysia has been trying to do it since 1988 and for now it's still 0.4% and (it's 1%) in just four ministries. How can we get employment if even the government won't employ us. Pandemic amplifies the voice of diverse people. Thank you for listening.