"I am proud of myself and will keep moving!" - Story of Ainaa Farhanah

Photo : UNICEF Malaysia

"Why are you in a wheelchair?" I get asked this question all the time. I was diagnosed with one of the rarest diseases in Malaysia called Spinal Muscular Atrophy (SMA) when my parents realized that there was a delay in my development. I was two-and-a-half years old and had not started walking yet. I could only stand for a few seconds before falling over. When I eventually started walking, I moved very slowly and needed help from other people.

Facts of Life

SMA is a genetic disease that attacks nerve cells, called motor neurons, in the spinal cord. Motor neurons communicate with your voluntary muscles - the ones you can control, like in your arms and legs - to make them move. As the neurons die, your muscles weaken. This can affect walking, crawling, breathing, swallowing, head and neck control.

These are the things that must be taken into consideration - I cannot sit up for too long due to scoliosis. I have to wear a body brace to support my spine. I cannot lift heavy things. I also eat very slowly as I need to chew and swallow my food. In addition, I easily get infections.

"I am not sharing this for your sympathy. I am explaining the facts of living with SMA so that you will understand."

While I cannot do things that many people can do, it is not an excuse. I went to a regular school from primary through secondary and college. I submitted all my homework and assignments on time. I participated in all my group assignments. And I just graduated from first city university college with a degree in Graphic Design.

My dream is to have my own design studio and to become an entrepreneur. It's easy to say, and not impossible to make happen. One thing is certain, I have to work harder than everyone else.

A #Thisability Challenge

In spite of my disabilities, I love to challenge myself. When UNICEF (The United Nations Children's Fund) organized the #ThisAbility Makeathon 2017, I submitted my ideas and was shortlisted.

Ainaa (front row, left) and the participants of the #ThisAbility Makeathon 2017 along with (behind from left) CEO of Petrosains, UNICEF Representative in Malaysia, Lisa Surihani, UNICEF National Ambassador in Malaysia and Zhariff Afandi, TN50 Ambassador.

As a wheelchair user, it is difficult and troublesome to carry things. I constantly depend on my friends to carry things for me. Especially when we're out shopping, I don't have place to hold things and rely on others to carry them for me.

So I came up with a 'bag organizer' to turn my wheelchair into a backpack. If my idea became a reality, it would be a big achievement for me and also useful for other wheelchair users.

It was just my mom and me in our little group. We were clueless about what we had to do. We had no idea on how to turn our product into a prototype. Thankfully, we were paired with an expert from a local maker lab to guide us on making a prototype. There are eight other teams in the #Thisability Makeathon representing different disabilities, each with their own clever ideas.

My expert was Mr. Ken from Biji-biji Initiative, who is a bag designer. It was a perfect match as he could make my dreams come true. I explained my idea to Mr. Ken. He made some quick sketches to understand my requirements.

We had to consider the size so that it is suitable for the average wheelchair. It also had to be big enough to be practical for the things I needed to carry. Mr. Ken got to work sketching the final bag design with the right measurements.

Once we were done with the brainstorming and sketching we proceeded to the next part which is creating the bags. All the prototype materials were provided and all we had to do was assemble it as designed.

I am lucky that I have a Supermom who is good at sewing! She got out her sewing kit and turned the felt cloth into a bag, while Mr. Ken made the bag handle. It took two hours for my mom to complete the sewing. We combined the bag handle together with the felt bag and found there were many issues.

We made a second iteration using different material. We also needed a hook to prevent the bag from falling. The hook, made of yoga mat material and rubber bands could be removed when not in use.

Finally, we had five minutes to pitch our inventions to everyone else at the Makeathon. It was a tiring but splendid Saturday!

Experience of a Lifetime

I had fun - and most importantly - I gained a lot of experience. This opportunity has only made me more determined to carry out my ambition to be a designer.

"Having a disability is something that I am not ashamed of. Despite the struggles that I face every day, I won't give up! For those of you who are challenged in any way, I urge you to never be embarrassed with yourself."

You are lucky to be here and to be born this way, so stand proud! Find out as much as you can about your disability and be determined to make the most of all your abilities.

Set goals for yourself and work hard to achieve them. We should applaud each other for what we have achieved and rethink "disability" as #ThisAbility!

#ThisAbility Makeathon 2017

For the record, on July 2017, UNICEF Malaysia held the first #ThisAbility Makeathon at Petrosains Discovery Centre, KLCC. The event was designed to give children with disabilities the opportunity to create assistive devices which would improve their lives at home, during play or in school.

Nine teams were paired with a huge array of materials and technical experts. In one day, the teams were supported to design, build, test, and iterate their ideas into a prototype. At the end of the event all teams developed a prototype using low and high tech tools, ranged from inclusive activity play packs, hand/digit tools, communication sheets, vibration therapy boards and wheelchair tables/organizers.

Two months later each team worked on a one-to-one basis with a specialist Innovation Maker Labs Kaki DIY and Biji-Biji to refine their prototypes into robust products.

Branden Lim's team won the Makeathon. He developed a gripping assistive device, which can hold a pen, paint bush or spoon. Branden's gripper which can be attached to a finger is made of a combination of plastic, Velcro and screws. The product allows a person who has limited fine motor skills, strength and dexterity to hold objects without the need to grip them between their fingers. The team was awarded a USD5,000 grant to manufacture their product for distribution within the disability community in Malaysia.

The winner was announced at UNICEF's "Childhood Disability in Malaysia: A study of knowledge, attitudes and practice" launch event on October 5th 2017, at Petrosains.

Other good potential prototypes are developed by Nikhil, 8, and Janna, 12. Nikhil's Team developed a camera/iPad remote control assistive device that can be fixed to a wheelchair and allows a person with limited strength and dexterity to control a camera with a 360-degree turning circumference using an iPad and joystick. While Janna's Team made a wheelchair hook, which allows a walking frame to be attached to the back of a wheelchair.

NOTE: Ainaa Farhanah, 22, recently graduated from Nottingham Trent University with a degree in Graphic Design. Check out "Conteng by Ainaa" on Facebook to learn more about her designs.