Disability is not inability

Mariselle Stofberg





“As humans, we easily use the word ‘normal’. It is a term that already has a very bad stigma. The moment you find the appropriate explanation of ‘normal’, you’ll realise that nobody really wants to be normal. Never compare your child to any other child. The way our educational evaluations for school, vocational and life readiness have been designed does not cater for extraordinary children,” said Huipie van Wyk, who has a bumper sticker that reads ‘I’m not special, I’m limited edition’.

“My daughter might have a disability, but I have one too. The difference is that the world can see hers, but not mine. That makes my disability much more dangerous than hers. Your child needs you to fight, your child needs you to dream. Hell, you child needs you to speak. All you need to do is speak and remember that your voice will be heard,” Van Wyk, who is the director of Side by Side Early Intervention Centre, a registered Section 21 company, said.

“Just because a child does not have the physical capability to write, walk, talk or eat does not mean that they don’t have a brilliant mind. Brilliance cannot be limited by set standards. Brilliance cannot be measured at all.”

Advocacy

Side by Side advocates and supports children with disabilities and focuses on early childhood development.

Through advocacy, they hope to strengthen services of early detection and intervention, and community-based rehabilitation.

“We believe that every child with a disability has the right to a healthy, educated and informed family, easy access to medical support, equipment and therapy and a right to social and educational inclusion,” she said.

As humans, we are created to be unique in every sense.

“We sometimes come pretty close to being the same, but there is always a sense of uniqueness in each person. Children with disabilities have difficulty to achieve their milestones. Just because they sometimes do not have the physical characteristics that other children have does not mean they do not have the brilliance to do so,” she added.

Inclusion

“Inclusion gives value. It shows every child, regardless of disability, that they are valued and adored. It shows them that they can be independent, and that there are others who believe in them. Inclusion desensitises the public and can tremendously impact the way they perceive disability.”

Van Wyk further said inclusion stands for equality. “I believe a person is only as disabled as his/her surroundings. Inclusion allows society to cater for all human needs. Without inclusion and a holistic approach, we are limited to our own needs and desires. We are not allowing ourselves to grow as a nation. It’s what brings everyone together.”

Streamlining training

The United Nations Children's Fund and the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) conducted a research programme earlier in 2020 to gather information on disability in children between the ages of zero and six.

As the director of Side by Side, Van Wyk lead the research in Keetmanshoop, Mariental, Rehoboth and Gobabis. She was accompanied Dr Hetta van Niekerk, a South-African educational psychologist.

The aim of the research was to compile manuals that would mainstream training done with communities, medical staff, parents and the educational sector. The information is relevant and reflects back on Namibian systems and cultures.

“Dr Hetta van Niekerk along with Dr Aune Victor of Unicef and the rest of the research team did an extraordinary job to compile all the information and manufacture these training modules that should benefit all Namibian children with disabilities,” Van Wyk said.

The manuals, titled ‘Early identification and intervention services for young children (0 to 6 years) with developmental delays and disabilities in Namibia’, will play an important role in the fight for inclusion.

Support is key

Side by Side doesn’t only cater to children. “As a mother of a child with a severe disability myself, I understand the role of family in a child’s life. Empowering the mother and father to not just speak for their child but also to speak for themselves increases the child’s chance of a quality life.

“Educating them and giving these parents voices is one of our main goals. I am extremely passionate about parents and communities.”

Van Wyk said these children’s fight for survival and education is directly influenced by the level of understanding their parents and family members have of their disabilities.

“Stigma is derived from lack of medical understanding. Once a diagnosis is understood and well-known, there is no room for stigma. You cannot fabricate anything when there is proof. These manuals are just that. The proof that every human within their uniqueness has challenges and strengths. We just need to look at life differently.”

She added that these manuals will help organisations like Side by Side and others to educate and motivate Namibians to fight for proper, well-managed and individual inclusion.

Not just a word

“Inclusion is not just a word, nor is it an action that happens overnight. It takes a multi-disciplinary team that is passionate about individuality to make it work. It takes creativity, endurance, faith in people and in the system to allow each child to be included in a healthy, comprehensive educational system.”

Informed teachers who understand different disabilities and the challenges that accompany them but also know how to build on their strengths are essential to ensure inclusivity.

Meanwhile, multi-disciplinary teams can be strengthened through the manuals to fight alongside parents for their children.

“Parents are key, but the support they receive is life.”

The manuals consist of five modules, with four written for the professional field and the fifth for parents.

Speaking up

“Parents need to speak out. They need to ask for help, and it needs to be specific. They understand their own challenges. They know what they need. Being specific when asking for help is essential. The DUN directory, which can be found on the Side by Side website, holds contact numbers, private and public organisations and email addresses of many resource centres in Namibia. It will be updated by the end of this year and will include even more resources,” she said.

Van Wyk shared that people have the misconception that because a child has special needs, they won't be able to be successful, have an education or even a future, which is entirely untrue.

Just because your child does not talk, it does not mean they do not perceive the world like the rest of society, she said, urging parents to keep their child’s spirit alive and talk to them like they would with any other child.

Their dreams, expectations and hopes are not that different from yours.

“Your child completes your book of life. Write your book. Do not let your child go with his legacy locked up in a box. Write that book and allow the world to hear their story. My daughter is the best bad news I have ever received. Her disability healed us, gave us life. Her disability highlighted the lack of love among our people. Her legacy is unity. Mommy, Daddy, go out and write your child’s book. The world is ready for it and the world needs it.”