I wish I could say that I am the type of person who always just loved being around people with disabilities, that I was drawn to them and felt an inner connection and always knew just what to do and say to have those Hollywood moments of inspiration for everyone in the vicinity.
But I'm not.
Truth be told, I was always a little uncomfortable, nervous even, when I had to interact.
Not to say I actively disliked them- not at all! Prior to Chelsea's diagnosis, I felt bad for them. I had compassion for them. I wanted to help them. But I didn't know how to behave and some of their behaviors were unexpected, or else "not normal". And that made me feel very uncomfortable. So I avoided them.
One instance when I was 18 or 19 stands out in my mind. I was talking with a neighbor when her foster daughter came out the door. The 15 year old girl was fairly mobile, but walked very awkwardly and had an obvious intellectual disability. She made loud cooing noises and acted like she wanted to hug me, and had drool all down her chin. One eye was looking at me and the other was pointed off to the side.
I had no idea how to behave. This was way outside my comfort zone. I clammed up big time. Should I hug her? Tell her no? Back away? Talk to her? But why talk to her if she can't talk back? Would her mom be offended if I did one of those things? Which one?
Yeah, I had no idea what to do. My neighbor politely excused herself as I stayed rooted to the spot with a frozen smile in place, and she led the girl back inside. I felt almost sick. Then I was completely disgusted with myself that I didn't even know how to handle a simple situation and was scared of a girl who clearly wasn't a threat or in full control of her actions.
I think a lot of people feel this way. We see a person with some sort of noticeable disability, and feel the inner drive to be kind and helpful.
But then that inner voice chimes in "What if they are embarrassed if I notice? How much do they understand? Would it be insulting to them if I offered to help? I don't want to offend anyone!
Is there even anything I can do to help them right now? I want to treat them like any other person, and I want to be kind and friendly, but I am so darn uncomfortable right now and I want to get away. Someone else would be a better friend to them than me anyway."
So we remain silent. We freeze up. We pretend we don't notice the abnormal behavior. Not out of disdain for the person, but because we are unsure of what to do.
You Aren't A Bad Person!!!
For so long, I felt like I was this nasty, horrible person for not wanting to be around special needs kids. I felt selfish. I felt like a coward. I felt guilty for feeling uneasy.
I saw other people interacting so easily with the special needs population and feel inadequate in comparison.
I didn't want to be phased by people with disabilities, but I was. Was I a bad person?
NO!!! It is a totally normal human response. We do that with all sorts of things! Haven't you ever seen a person who says "Ew I won't eat THAT!" but has never tried the dish before? And we say "Try it, you may like it."
Same principle here. People with special needs aren't disgusting scary people. They are just different. Something new!
People are scared of what they don't understand.
Don't beat yourself up for being human.
I have been around someone with a disability almost 24/7 for 9 years, and I still find it challenging to interact with some people who have disabilities. Because by golly, I just never can anticipate what each one will do! They don't always follow social protocol, and that is what our "typical" brains are trained for!
So What Do I Do?
It is simple, really. The best way to get used to people with disabilities is to be around people with disabilities.
Say hi to the man with Down Syndrome at church.
Invite the mom with a child with Autism over for a playdate.
Choose the checker that is a little slower scanning items who has a disability and talk about the local baseball team.
Once you start looking, there are a lot of people with disabilities. And they are pretty awesome people who like pizza nights and jokes and just want friends.
Just like you.
So let's be kind and friendly. That is a great place to start.
What Should I Say?
Now, there are soooooo many different kinds of disabilities, and just as many personalities to go along with each one! So there is never one "perfect answer" of what to say or do.
But for those people who are kind and want to help but aren't sure how, here is what I have learned:
1. These kids are just kids. My little girl loves being told that she has such a pretty dress, or is a wonderful helper for her mom. She likes eating ice cream and playing with friends and watching movies. She is over the moon when she gets invited to parties. She wants to be seen as Chelsea, not as just a disability.
2. Just say hi. It can be lonely being a parent. It is even lonelier being a parent of a child with special needs. Remember the scenario I said above? How people want to say something then don't for fear of offending someone?
I see the awkward glances and you turning your head quickly to pretend you aren't staring. No judgement here- I notice other people with disabilities too!
And I go through the same dialogue in my head. "Should I say anything? Maybe they don't feel like talking. They might think I am weird or creepy if I go up and act like they are my best friend. They look preoccupied anyway. What if they are nervous about covid?"
Just a quick "Hey! Your daughter's glasses are super cute" or "She has the most beautiful smile" goes a long way.
3. Most people don't mind the questions
I never, never, never get offended by sincere questions. My child means the world to me, and I love telling people about her disability, because they immediately have more patience with her, and also, knowledge is power! I want people to know about the different kinds of disabilities out there.
I can probably count on one hand the number of times someone has been actively rude about my child with a disability. If somethings comes across wrong, more often than not it is just a misunderstanding.
Normally, the person asking is very timid in asking. I don't bite, I promise! And the only person Chelsea ever bit was her dentist, so odds are you will walk away unscathed.
Ways I ask:
"Hey! I noticed your son is using a communication device! Technology has come so far. Can you tell me what program he uses?"
"Your little girl reminds me of my favorite cousin, they laugh the same exact way! May I ask if she has a diagnosis?"
"I saw you signing with your child. That is incredible! Did you always know sign language or did you learn for your child?"
And if you don't want to ask about the disability, guess what? That person is still a PERSON, not just a disability. So talk about whatever you would with a "normal" person.