By Mika Hartman
October is here. As we commemorate both Down Syndrome Awareness Month and National Disability Employment Awareness Month, I can reflect on what I have learned on this journey, share some hard truths and hope for a better tomorrow for my son.
Hudson is only 6; however, the dreams I have for him should not be limited based on an outdated mindset or the no-longer-applicable laws that still exist. It is time to look at the success stories of our children and raise our expectations. It is beyond time to put back in the hands of people with disabilities what their glass ceiling is and whether they can break it; that is up to the individual.
The laws, as written today, hold back our buddies and give society doubt that they can achieve greatness. We currently live in a “prove-you-can-do-more” versus a “sky’s-the-limit” outcome, all while holding back the tools needed to achieve the successes our buddies deserve and desire.
Did you know that if two people with Down syndrome want to get married, they will lose their Supplemental Security Income (SSI) benefits? Why? Because they would become a two-income family and exceed the cap to receive the benefits — all while many states still offer sub minimum wages to our friends born with an extra chromosome. Many families find themselves fighting against raising wages so as not to endanger the benefits that their loved one depends on. How backward is it to penalize an individual who must work harder at the job they have while likely not receiving the proper training, and who often is the first to be let go during layoffs? It’s more than outdated; it’s discrimination.
I don’t care if he wants to build pizza boxes or run for President of the United States; it is up to me to make sure he has all the tools he needs to fulfill his dreams.
Last year, I wrote about my hopes for Hudson’s future. I don’t care if he wants to build pizza boxes or run for President of the United States; it is up to me to make sure he has all the tools he needs to fulfill his dreams. If he wants to be married, I absolutely want that for him, too. It’s what we should all want for him: to find love, to be loved and to have the choice to give a girl his last name. I more than welcome it; I pray for it.
Two individuals with Down syndrome, whom I met years ago, may not have been able to be legally married; however, they did have a commitment ceremony. Heather and Craig Blackburn fight this issue at every turn. They didn’t let the law stop them from being committed, but it has stopped them from living together because they now live in two different states; moving would change their benefits. Crossing state lines can change so much for our buddies. We are a military family, and I understand this inconvenience all too well. Our families already have enough challenges, and it seems like elected officials could help make some things easier.
Let’s also talk about what SSI provides: it varies per state, but the maximum monthly payment is $943. That is $11,316 per year per person. If a person earns $2 from work, their SSI payment will be reduced by about $1. If a couple gets married, their benefits go to $1,371 on average per month for two people. Divide that in two, and you see they go to $685 per person — and that’s only if they don’t have a job, much less both working. The system punishes two people who want to be married and work but need the benefits because they have more health concerns and needs — such as glasses, hearing aids, thyroid medication, heart issues, transportation worries, accessible living needs and more.
In celebrating NDEAM, I ask that you get involved. Learn about the laws that need to be revised, and be a voice for the needed change. I ask that you see my son and his possibilities, not his disability. Remove the outdated stigma, and do some research to see what all our buddies are accomplishing today. Help them achieve their dreams; don’t be the one stopping them.
My son is EXTRA; if or when he pops the question one day, I hope the worry of this issue is gone and we can focus on celebrating the future Mrs. Hartman and the next chapter of the life we want for our son. That is the life he EXTRA wants and EXTRA deserves!
Mika Hartman is a wife, mom, advocate and a voice for needed changes in Mississippi. She has had three laws signed by Gov. Reeves, has helped with others and serves as a Key Spouse for the United States Air Force. Reach her at mikacj@yahoo.com.