A hurtful look, a too small corridor: the harsh reality of how a lack of awareness affects the disabled community.
One day, Shamma Al-Hammad, mother of Ahmed, now 13, took her son to the mall to play in the ball pit with other children his age. She wanted to see her son happily playing with toys, throwing the balls in the air and giggling with joy.
Suddenly, while they were standing in line, a little girl started crying loudly. “Mom, let him go. He looks scary, ”the child said to her mother and pointed to Ahmed.
Ahmed was diagnosed in 2011 when he was around 3 years old and had Coffin-Lowry syndrome. His syndrome is a rare genetic disorder that is characterized by intellectual disability and other developmental disorders.
Instead of politely correcting her child, the mother looked at Ahmed in disgust without hesitation and then looked at her child and said, “It’s okay, he’ll be leaving in a moment.”
The moment of joy and happiness turned bitter and suddenly became another hurtful episode in Shamma’s and Ahmed’s lives.
“I went home broken,” recalls Shamma. “Everyone looks very hurtful and so awareness is important. Everyone is different and that’s okay. “
Unfortunately, Shamma is one of the many who experience a lack of awareness or insensitivity to disabilities. People’s lack of knowledge about disabilities can adversely affect their attitudes towards people with disabilities and ultimately create an unsafe environment for them and their caregivers. However, Although disability awareness has increased in Qatar in recent years, the community says there is still a long way to go.
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For some people, they have felt the need to take matters into their own hands. One of them is Nawal Akram, a Pakistani woman with a physical disability. Nawal was forced out of school at a young age due to her disability. After tireless but failed efforts to get back to education, she made it her life goal to advocate that others never know what she was going through.
“The education system is not responsive and no one in the system is held responsible for taking away a basic human right,” said Nawal.
“After I was forced out of school because of my physical disability and never had the opportunity to return, I started activism for people with disabilities in Doha. As I was telling my story and advocating for the disabled community, I met other parents who were studying the same issues and continued my journey. “
Nawal used her social media platforms to campaign for disability rights and to raise awareness. In addition to being a disability rights activist, Nawal is the founder of the QS Muscular Dystrophy Support Group, which aims to raise awareness of the condition and community involvement through law and policy changes.
“I feel like there is some level of awareness but no action has been taken. There have been no changes to hold people accountable and frankly it is very disappointing to even be treated differently because of your disability, ”added Nawal.
“If you go to one of the disability societies, there are services that are only offered to certain people depending on their nationality or type of disability. If you have this disability, you cannot have it [a service] and if you are of that nationality you cannot have a caretaker. “
To push for a policy change, Nawal launched a campaign called #EqualAccessQA to protect people with disabilities in the area regardless of age, gender or nationality
“The #EqualAccessQA campaign is an initiative starting in Qatar to raise awareness of the rights and needs of people with physical and mental challenges and to promote equal access and treatment for all across the region,” added her.
For other people in the community, accepting that disability is not taboo or shameful anyway is a crucial beginning to changing the community’s understanding of disability.
“People need to talk about it and say it’s okay to have a child with a disability. It is okay for you to have a disability. The community has to accept that, ”Sherif Al Gendi, who has an unknown physical disability, told Doha News.
“The fact that it’s ‘shameful’ or something to feel sorry for is wrong and needs to be changed.”
Sherif Al Gendi.
Sherif adds that in addition to normalization and acceptance, workplaces and educational institutions also need to take important steps to cater to and be open to direct communication with the community with special needs.
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“Every job should have some kind of mentor who has experience in dealing with employees or people in general with special needs […]Schools should also have special educational services and finally, special needs centers should be split up into mainstream schools so that there is no isolation, ”he added.
To take a step towards accessibility and awareness, Shamma, Ahmed’s mother, founded a company dedicated to supporting all special needs and carers in Qatar. The company, called by S Momly, offers services such as workshops, products, information on disabilities and even flyers to raise awareness on various topics.
Shamma started the company years ago after struggling to find a diagnosis for her son. After numerous visits to the doctor and a lack of self-help groups, she made it her life goal to bring about change.
“I know exactly how difficult it is to find resources and even find people to talk to who are going through the same thing. As I mentioned earlier, I struggled with the limited sources in the early years to get the correct diagnosis, ”Shamma added, highlighting why Momly by S was founded.
“I don’t want people to go through what I’ve been through and that’s why MomlyByS was found. I want people to find support, guidance and services that are lacking in the market. “
People with disabilities and their carers can always contact the company for support, help or inquiries. Shamma has also set up WhatsApp groups Which people in the community can ask questions and which specialists are available to answer them offers easy access to resources at the push of a button.
Despite all efforts, there is still a huge awareness gap in the country, explains Shamma. She said that community awareness is critical to changing the misconceptions about disability as “shameful” or as something to hide from.
“I think we need more community-oriented initiatives and services. I mean, having more independent centers and people talking and sharing their experiences and stories about disabilities, ”she added.
“We have to normalize the disability. We need people who are more open about disability and who don’t treat it as taboo. Our plan for 2021 in MomlyByS focuses on the idea of creating support groups and communities. “
In addition, people with “hidden disabilities” need more support. While the country allows access to people with physical disabilities, including improving access to public transport, people with intellectual disabilities who are somehow “hidden” are sometimes neglected.
“When workplaces can understand that accessibility isn’t just about physical access, it’s also about hidden needs,” she explains.
“People with hidden disabilities such as mild intellectual disabilities and people with autism spectrums may not need special physical access, but intellectual access. When jobs can understand this, they offer many opportunities and improve many people’s lives. “
Awareness, Acceptance and Policy Changes: These are all critical steps in creating a safe environment for the disability community in Qatar. A well-designed disability awareness intervention can help improve knowledge of special needs, attitudes toward people with disabilities, and peer acceptance. And while some improvements have been made in the past few years, it is clear that more needs to be done.
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