Why Fighting for School Inclusion Is So Hard -- but Shouldn't Be

Today is a very profound day. It is my daughter Yassy’s last first day of public pre-K – 12 school. She is a proud senior. After a great summer, where she had a wonderful paid job and lots of fun experiences, she was very excited to go back to school today. She has a great schedule and wonderful teachers. These are all things I never take for granted, because Yassy has Down syndrome.

About an hour after school started, I went to the building to deliver supplies and items to various teachers my daughter has this year. I love doing that. Our educators are golden angels sent from above, and they are often undervalued. Very few people say thank you. Since my parents were both educators, mom at the elementary and junior high levels, and dad at the college level, I have an ingrained reverence for teachers. And I love being in schools. So much so that much of my civic work with non-profits has been in schools.

So here I was today, walking around her very large high school, seeing the various administrators and teachers, etc. and it felt so good. So right. Then all of a sudden, in the middle of the school, I had a flashback. The large smile I had on my face dissipated instantly.

I remembered that when my daughter was in ninth grade, I did not like being in the school. I did not feel welcome, and that was a hellish year, for lack of a better word. It was the first and only time I have ever had that feeling. There have been bad teachers along the journey of course — but never before did I feel unwelcome in a building. Feeling that way is indescribable. Imagine how a student feels knowing they are unwanted in one or more of their classes, for no reason beyond a disability. Even when their communication is limited, they know.

My daughter had always been 100 percent included in general education courses up to that point, but high school is another animal. Because of graduation requirements, every single class is taken very seriously. And sadly, when a district is not used to truly embracing inclusion and is understaffed, they may have a hard time aligning high school standards with accommodations and presuming competence. In fact, most students with a significant disability are placed in self-contained classrooms all over my district, and in thousands more across the country.

That is the way things have always been done and continue to be done. School districts often align themselves with local non-profits that have low expectations and sheltered workshops, and assume that is the best they can offer “these students.” The schools are often pipelines for the lack of progress many people with disabilities have experienced over the last 50-plus years.

So when my daughter was in ninth grade, more than a few people in her school thought she should be placed “over there” in self-contained classes. Well-meaning general education teachers had no experience with true person-centered planning and were stunned when I rejected the pipeline to mediocrity I knew was in place.

It took months of angst, meetings, and phone calls to many experts across this wonderful country, but my husband and I were finally able to put a plan in place for Yassy that would keep her on a challenging and fully inclusive track. I am very grateful to my district’s administrators downtown and in her high school who helped us navigate this new way of doing things.

In the end, it was my daughter’s wonderful work ethic which showed what she could do — she passed many standardized tests that shocked some non-believers. Our refusal to accept anything less than a fully challenging inclusive track that builds a meaningful transcript changed the course.

By the end of ninth grade, my feeling of dread was mostly gone and by tenth grade it was definitely only a memory.  Fast forward to today — and today I am thinking “Life is great now, but it should not be this hard!”

I think of all the families that simply go by what their school recommends, out of reverence and a belief that the educators know best. This often means taking away any chance of an inclusive education at a very young age. I think of all the families who have to make sacrifices to have their child included, which often means one parent cutting back their work schedule or cutting it out completely. Sadly, a single parent often has a much harder time in these cases. I think of the massive amounts of continuing education a parent needs to be able to best help their child at home, so they can be successful in school. I think of the numerous relationships one must have in their district to navigate this course. Those relationships help overcome inevitable roadblocks. And I think of the thousands of overloaded educators who do not have the proper support, education and staffing at their schools.

And again I say, “It shouldn’t be this hard.” And it is getting harder. Inclusion seems to be slipping away instead of becoming more feasible. That is apparent by looking at those behind me, and the lawsuits that keep coming from parents struggling just to have their children included in very early years like kindergarten and first grade.

My husband and I are so incredibly grateful for my daughter’s inclusive education. The bigger question is what can we do as a society to make sure more students like my daughter have the same chances she did? Let’s move forward — together.