COLUMN: Families should not be responsible for disability laws


Rob Le Cates

Madelyn Kidd is a senior journalism major and can be reached at 217-581-2812.

Madelyn Kidd, News Editor

Growing up I have always known four things.

One, there will be a day when my parents pass away, and I will be responsible for my little brother regardless of either of our ages.

Two, this world is not always kind or fair to my brother.

Three, my parents, other parents and family members have had and continue to have to fight for opportunities and better laws for my brother and others.

Four, my brother is autistic, non-verbal and will have more obstacles in life to get through to have what he needs and wants.

I was fairly young when my brother was diagnosed as autistic, but before then my family knew something was different. He was two-years-old to my six, and to me he was like any little sibling- because he was my only sibling.

I didn’t worry or fret when he suddenly stopped saying words that he still has not said again to this day, or when he didn’t play pretend with me, or when he would make different repetitive motions with his hands or body.

To me he was just my brother, but to my parents who raised me first and never experienced this, they started looking for answers.

Eventually, we got the answer, but there were still questions, and my parents started researching everything involving opportunities, laws to protect and help him and more.

But for me nothing was different, not until my family joined various autism groups full of other families of autistic children.

For me, this was always fun. I made new friends who didn’t act differently about my brother, and my brother made friends who also didn’t talk or expect him too and had some of the same mannerisms.

However, for our parents it was a support group, and a place to share the fears of a scary reality awaiting my brother when he reaches adulthood.

While many people, especially in this area, will always hate how Chicago makes Illinois a very progressive and liberal state, I will always be thankful for it.

Because of Chicago, we have a few laws, acts and opportunities Illinois has for people with autism that my brother won’t get in any other Midwestern state.

But there are still very few opportunities for my brother in the rural parts of central Illinois, and the state and federal laws can only help so much, which are the exact fears and concerns my parents and others had for their disabled children.

As a result, my family has been a part of various groups that helped provide events, activities and normal childhood experiences for my brother and other autistic children.

Meanwhile us siblings also got to have a blast between pool days and park days where we were in a big enough group with like-minded and aware people, we didn’t care about the stares we got.

Pool days and park adventures were just the beginning, and easy because it was a public area. However, one of the best things my mom and other “auti-moms” were a part of was advocating for a sensory-friendly movie viewing once a month at the AMC Theatre in Mattoon.

For those who don’t know what sensory-friendly movie viewing would mean, it included: some lights remaining on, the sound would be set quieter, it was okay for people to make noise and run around, but most importantly, it gave my brother the opportunity to go to the movies and enjoy it.

However, I only remember getting to go to the movies with my whole family without any problems or disruptions.

I wasn’t there when our parents were fighting for the AMC Theatre to provide this, but it was a battle. Until we got creative.

There was one auti-mom who I would call the head organizer of it all, and she planned a day where everyone involved emailed and/or called the head person of AMC Theatre, not just the Mattoon location, but the head of every AMC Theatre.

This man received hundreds of emails and calls in one day.The best part, turns out this guy was on vacation on the day when everyone called and/or emailed.

This man took the time out of his vacation week to call the head organizer auti-mom to find out what was going on and how to find a solution to it. Needless to say, the next month we had the first sensory-friendly movie viewing.

Then recently, our mom was in a training program for disabled people and families to learn how to advocate, lobby, make petitions for bills and more to have more rights and opportunities for my brother and others.

However, it should not take the family of disabled children to provide opportunities for a fun life in childhood and adulthood. There should not be obstacles to having fun opportunities and health care and a home for disabled people.

Because one day my brother will be my responsibility, because if after our parents pass away the only option would be me or the state, and there is no way I’m letting my brother be stuck with only what the state will allow him.

But it can be stressful for me, the idea of how to take care of my brother and make sure he can have every opportunity he wants without obstacles in the way. Because any other option is scary, and it shouldn’t be.

I shouldn’t have to think and know that the state won’t be able to help my brother like they should. I shouldn’t be afraid of what would happen if our parents and I were to die together in an accident leaving him alone.

I shouldn’t have to get frustrated and sick of how not having hundreds of thousands of dollars means my brother can’t experience some things others can.

But that’s the system; that’s the game, and it shouldn’t be.

Once, our mom and I were talking, and I don’t remember how but it was brought up for my brother might one day be a part of a program when he is an adult where he could live on his own to an extent.

He could share either a house or apartment with other autistic men in the program with caretakers that visit and monitor them, but otherwise they would be as independent as possible.

And the joy on my brother’s face about just the possibility of being able to live on his own in a way as an adult, is something I’ll never forget.

I want that life for him, but of course there’s obstacles in between that opportunity and him, and as his family we help him get to what he wants.

Right now, he is still a minor, but in the future I hope he gets that freedom someway.

Even if it’s just our dad building a separate addition to the house so he can have his own area to himself, I want him to have that.

But no one should have to fight for their disabled family members to have that.


Madelyn Kidd is a senior journalism: public affairs reporting major. She can be reached at 581-2812 or at [email protected]