Everyone in this world has needs but not all people have the same needs. Tabia McKinzie wants to raise awareness for people who have what most would call “special needs.” This has been brought to the forefront for McKinzie because of her daughter, Nandi. Nandi has Turner syndrome, a rare disease that affects only females. It is caused by a missing or partially missing X chromosome. It results in shorter height and can cause heart issues, high blood pressure and hearing loss among other things. The good news is that with proper medical care, women and girls with Turner syndrome can lead full, independent lives.
Nandi didn’t speak until she was 4 and the shape of her mouth prevents her from making all sounds, but her mother said speech therapy has helped Nandi communicate loud and clear.
In addition to raising awareness about the challenges rare diseases can present to young people, McKinzie also wants to create a global community where people with different needs and their families can find support.
“If they can see others with that need, they will see they’re not alone,” she said.
She wants caregivers to find help and comfort, even if they are separated by states, countries or continents. She launched a hashtag on Feb. 28 — World Rare Disease Day. The hashtag #disabilityvisiblitychallenge was created to encourage people who love someone with a disability let others know they are not alone.
“Disabled people have a right to be seen and heard in society,” McKinzie said. “They should be shown empathy, loved, supported, understood, appreciated, have equity, respected and protected. They should feel proud of who they are and celebrated!”
She challenges people to post a photo of a loved one — with their permission — and challenge another person to do the same by tagging them in the post.
“Many people who have a disability in the family aren’t ready to share yet, but even if they don’t share, maybe they will reach out,” McKinzie said.
McKinzie said she always took Nandi with her when she went out, but it took a while for her to use the term “disabled.” She said she understands that people who are in a similar situation need to handle it in their own way.
Because not all disabilities are visible, McKinzie said she expects the challenge will help show a variety of disabilities and special needs people live with daily. She also hopes the challenge will encourage others not to judge anyone with disabilities.
“I want my daughter to be well informed of what she needs help with and what her strengths are. I want her to be fully independent one day,” McKinzie said. She doesn’t want Nandi to ever be ashamed or embarrassed because of her certain set of needs.
That’s probably not going to be hard for Nandi, though. She is a sweet, beautiful, smart, energetic pre-teen who loves to laugh and is not afraid to show off all her greatness. She loves animals, team mascots and dancing. She also loves technology and has an amazing memory.
When Nandi turned 11 this past year, McKinzie wanted to do something special for her. They chose to have a mother-daughter photo shoot, which shows Nandi and her bold, beautiful, courageous self.
“In the African American community we tend to shy away from disability and not be open, but it has to be shown,” McKinzie said.
She believes “now is the best time” for her hashtag challenge and efforts to further support and protect anyone with disabilities.
It’s time. Join the challenge: #DisabilityVisibilityChallenge.