My story of advocacy starts with two brothers who shared a womb, born just seconds apart, whose bond is unbreakable.
Whose expectations at home are the same: respect, hard work, and love. The only difference between the two is about 4.36 seconds…
But wait: One twin has an intellectual disability. Doesn’t that makes them light-years apart? Your expectations can’t really be the same, you say.
I’m not naive. I understand that my twin boys, one who is neuro-typical and one who has Down syndrome are different in various ways. I admit, my acceptance of Troy and belief that he deserves the same human rights as Hunter has been an evolution. To understand that evolution read my birth story here.
Unfortunately, society’s expectations of these twin brothers are vastly different than our own, and in many ways prevents Troy from reaching his full potential.
My goal is that both of my son’s will graduate high school side by side in the year 2031. Both will go to college, get a worthwhile job, and be happy, productive citizens of this great nation.
If you have a child, especially a child with developmental delays, you realize how lofty a goal this is…may be you think it’s impossible. And in too many cases today you’re right.
The landmark civil rights law, Individual with Disabilities Education Act (IDEA), was passed promising all children with disabilities a free and appropriate education (FAPE) in the least restrictive environment (LRE) with an individualized education plan (IEP).
But more than 40 years after this law was passed, we know this is not the reality of education in many places in America. The law has never been fully funded. Students with disabilities are leaving school unprepared for an independent life full of worthwhile employment and self-reliance.
You know children (may be your own) who are currently segregated, secluded in special classes, or bussed to a different school away from their siblings and typical peers. Only 17% of students with an intellectual disability are educated alongside their typical peers. Often they learn to clean the cafeteria and do laundry, instead of learning to read, write and do math alongside their typical peers.
After a segregated school environment, they’re move into a segregated work environment at sheltered workshops, or they stay home and watch TV. One in 3 people with disabilities live in poverty; 80% don’t work at all.
They are the living embodiment of segregation in America today.
My twin boys are just starting their educational career. It’s something that keeps me up at night (as I write this at 12:55 a.m). This project is the beginning of my research into inclusive education and employment for my son, Troy. And in doing this research I hope I help others on their path to inclusion.
I understand that society has completely different expectations of my twin boys. But I do not. Fair is not always equal. What I’m asking for is EQUITABLE INCLUSION. I want my son with Down syndrome to join his peers, with the appropriate supports and modifications to be successful in his own way. I know that he may not “keep up” with his twin brother, but that doesn’t mean he can’t meet his own definition of success in school and work. I don’t want inclusion in name only…if so, I might as well have him in a special class with one-on-one support, and a sheltered workshop for employment. No, I’m asking for EQUITY. All people learn and work in their own unique way, and Troy deserves to do that alongside his peers.
I hope you’ll join us on this journey of inclusion.
