What’s it like being Joel’s sister?
Being Joel’s sister is the greatest and most important role in my life. I know I talk about it all the time but how can I not? Joel is what keeps me busy and keeps me here. I would do anything for that boy.
I know there’s a lot of talk and promotion to not refer to people with disabilities as a client if you work for them but, in all honesty, I think there are bigger things to worry about than that. I don’t see why calling them my clients is wrong when they really are my clients. I don’t know if anyone of you has seen this image of a man with down syndrome with his arms crossed with text over it: “client” is scratched out and then says, “I’m a person, brother, uncle, friend.” I understand that the image is trying to say think of our loved ones with disabilities as more than just a client. Awesome. I get it. But referring them as my client when they are my client is not taking away from that. I love my clients. I love hanging out with them, visiting them, taking them on all kinds of outings. I love giving them random gifts. I love doing all the hard work with them too.
If you go to an accountant to do your taxes, are you going to get offended by the accountant for calling you their client instead of _____? No, that’s crazy! I completely understand that they are much more than just my client and they are amazing individuals, each with their own personalities and character. But also, there is nothing wrong with them being my client. It’s not a negative thing, it’s just a fact of life. Disabilities are natural and so is anything that comes with it. I don’t see it as demeaning and if you see it as demeaning, I’m sorry.
I recently saw this quote by Amy Sequenzia and I think it hits hard. “They use people first language and forget our humanity.”
Okay, I’m done with that.
Like I said before, in this post, I am no one to tell people whether to use people first language or not. It’s about your personal beliefs and arguing about it or correcting people is not constructive. It actually makes me so mad when I see a person without a disability correct someone with a disability about using people first language. I personally do like using people first language for the most part but I do see where in some instance it makes it look like we are trying to say that disability is a bad thing. Either way, whatever empowers you and your family, go for it.
Okay, now I’m done.
Working in the field that I do, I come across a lot of families, particularly sibling of the clients (my clients are people with developmental disabilities, mostly older adults) that I have. I’ ve seen siblings that do the minimum, some that do nothing at all but sign the name, and some that are extremely involved and helpful. Most of my clients are older adults whose parents are either very elderly or deceased. For many, this means that if their siblings do not step up, they have no family involvement. I can see why that would be hard for siblings to do if they never had a real relationship with their sibling with disabilities. Some don’t try though and that’s what really gets to me. It’s not that hard to visit or to call and check in and this leaves people like my clients forgotten. I just can’t understand that. I can’t imagine why.
I actually dealt with a parent of a client, we’ll call Kitty, one time that said her other children did not ask for a handicapped sibling and that they did not have to burdened with Kitty. My heart died a little at that moment. This mother was distraught about Kitty pursuing a relationship. Kitty’s mother didn’t think that was okay or allowable. Kitty’s siblings are not in the picture and don’t seem to care or try to be part of her life, even though Kitty has tried to reach out to them. I don’t know how anyone can do that. How can anyone look at their sibling with a disability and say, you’re not that important to me, you’re not my responsibility? Especially after the parents have passed.
In my opinion, family is family. It should fall on the siblings to pick up the slack and help out but not everyone feels that way. My parents certainly did not pressure me to help with Joel, although occasionally they did ask for my help. I never felt obligated nor did I feel like it wasn’t my job to do so. I do everything I can for Joel because I want to and I know my parents need help navigating everything. Joel is like any little sibling, he fights us, annoys us, and sometimes hates us. But he also gives the best hugs, kisses, and laughs. I know as advocates for our loved ones with disabilities, we like to say that they can be anything and do anything… But at the end of the day, they really do need extra support and help. As a siling, I want to be that extra support when my parents can’t. And I don’t see how another sibling wouldn’ feel that way.
Well… yep. Those are my thoughts.