A hurtful stare, an aisle too small: the harsh reality of how lack of awareness impacts the disability community.
One day, Shamma Al-Hammad, mother of now-13-year-old Ahmed, took her son to the mall to play in the ball pit with other kids his age. She wanted to watch her son play happily with toys, throwing the balls in the air, and giggling in joy.
Suddenly, as they were standing in line, a small girl started crying loudly. “Mama, make him leave. He looks scary,” the child said to her mother, pointing at Ahmed.
Ahmed was diagnosed in 2011 when he was around 3 years old with Coffin-Lowry syndrome. His syndrome is a rare genetic disorder characterised by intellectual disability and other developmental abnormalities.
Instead of correcting her child politely, the mother, with no hesitation, looked at Ahmed in revulsion and then looked at her child and said, “it’s okay, he will leave in a bit.”
The moment of joy and happiness turned bitter, and suddenly became yet another hurtful episode in Shamma and Ahmed’s life.
“I went home broken,” Shamma recalls. “The looks from everybody are very hurtful, and this is why awareness is important. Everybody is different and that’s okay.”
Unfortunately, Shamma is among many who is impacted by a lack of awareness or insensitivity when it comes to disability. People’s lack of knowledge about disability can adversely impact their attitudes toward people with disabilities, ultimately creating an unsafe environment for them and their caregivers. However, though disability awareness has been given prominence in recent years in Qatar, the community says there is still a long way to go.
For some people, they’ve felt the need to take matters into their own hands. One of them is Nawal Akram, a Pakistani woman who has a physical disability. Nawal was forced out of school when she was young due to her disability. After relentless yet failed efforts to go back to education, she made it her life goal to advocate for others to never experience what she had to go through.
“The education system is not accommodating and no one in the system is held accountable for taking away a basic human right,” said Nawal.
“After being forced out of school because of my physical disabilities and never getting the chance to go back, I started activism for people with disabilities in Doha. While sharing my story and campaigning for the disabled community, I met other parents who were dealing with the same issues, so I continued my journey.”
Nawal started using her social media platforms to advocate for disability rights and raising awareness along the way. Apart from being a disability rights campaigner, Nawal is also the founder of the Muscular Dystrophy QA support group, which aims to raise awareness of the condition and inclusion of the community through law and policy change.
“I feel like there is awareness to some extent, but no action taken. There haven’t been changes to hold people accountable and it is honestly very disappointing to even be treated differently because of your disability” Nawal added.
“If you go to any of the disability societies, there are services that are only provided for certain people depending on the nationality or type of disability. If you have this disability then you cannot have this [a service] and if you have this nationality then you can’t have a caretaker.”
In an effort to push for policy change, Nawal initiated a campaign called #EqualAccessQA to help protect anyone with a disability in the region regardless of their age, gender, or nationality
“The #EqualAccessQA campaign is an initiative starting in Qatar to spread awareness about the rights and needs of people with physical and intellectual challenges and promote equal access and treatment for all region-wide,” she added.
However, for other people within the community, acceptance that disability is not a taboo or in anyway shameful is a crucial start to changing the community’s understanding of disability.
“People need to start talking about it and say it is okay to have a kid with a disability. It is okay for you to have a disability. The community has to accept it,” Sherif Al Gendi, who has an unknown physical disability told Doha News.
“The fact that it is “shameful” or something to give pity for is wrong and needs to be changed.”
Sherif also adds that apart from normalising and accepting, workplaces and educational facilities need to also take major steps towards catering to the special needs community and be open about communicating directly with them.
“There should be some kind of mentor in each job who has experience in dealing with employees, or people in general, with special needs […]Schools should also be given special education services, and eventually, special needs centres should be split and put in mainstream schools so there would be no isolation,” he added.
To take a step forward towards accessibility and awareness, Shamma, Ahmed’s mother, started a company that is dedicated to supporting everything related to special needs and caregivers in Qatar. The company, named Momly by S, provides services like workshops, products, information regarding disability, and even flyers raising awareness regarding different topics.
Shamma started the company years ago after she struggled to find a diagnosis for her son. After numerous doctor visits and a lack of support groups, she made it her life goal to create a change.
“I know exactly how hard it is to find resources and even find people to talk to who are going through the same thing. I struggled in the early years with the limited sources, as I mentioned, with getting the proper diagnosis,” Shamma added, highlighting why Momly by S was founded.
“I don’t want people to go through what I went through, and that is why MomlyByS was found. I want people to find support, guidance, and services that are lacking in the market.”
People with disabilities and their caregivers can reach out to the company anytime for support, help, or inquires. Shamma has also set up Whatsapp groups through which people in the community can ask questions and specialists are available to answer, providing easy access to resources at the click of a button.
However, even with all the efforts, there is still a huge gap when it comes to awareness in the country, Shamma explains. She said that community awareness is crucial to changing the misconceptions surrounding disability as “shameful” or something to hide from.
“I think we need more community-centered initiatives and services. I mean having more independent centers and people talking and sharing their experiences and stories about disabilities,” she added.
“We need to normalize disability. We need people to talk about disability more openly and don’t treat it as taboo. Our 2021 plan in MomlyByS is centered around this idea of creating support groups and communities.”
Not only that, but more support needs to be given to people with “hidden disabilities.” While the country has been providing access to people with physical disabilities, including making public transportation more accessible, people with intellectual disabilities that are somehow “hidden” are sometimes being neglected.
“If workplaces can understand that accessibility is not only about physical access but also hidden needs,” she explains.
“People with hidden disabilities like mild intellectual disabilities and people with autism spectrums might not need special physical access but need intellectual access. If workplaces can understand this, they will provide many opportunities and make many people’s lives better.”
Awareness, acceptance, and policy changes: these are all crucial steps towards achieving a safe environment for the disability community in Qatar. A well-designed disability awareness intervention for everyone can help improve knowledge about special needs, attitudes towards people with a disability, and acceptance of peers. And though there are some improvements that have been made in previous years, it is clear more needs to be done.