My brother has a mental disability. I mean it doesn’t have a name, like autism, or Down’s syndrome, it’s just “mental delay” meaning he looks normal, and doesn’t have any particularly diagnosable symptoms besides what I can only describe is that he has the mentality of a person of anywhere from six to twelve years of age depending on what category you are looking at.
I see many articles and blog posts of “What not to say to a parent of a special needs child” or “How to act around a parent/person with special needs…” “What it’s like to be a parent/person…” “What to eat and drink around a parent/person…” “How to blink around a parent/person…”
There is TONS of literature aimed at the parents of special needs kids and persons with special needs and rightly so! They have to deal with a lot of stereotypes, negativity, stress, paperwork, researching new medications, new therapies, new exercises, specialized care. It is enough to make your head spin and they deserve all the respect, help, and support they can get, or want. But you know what? I have never seen anything about how to help, support, or treat a sibling of a special needs person. There’s nothing out there that tells you what it’s like to have a brother or sister with special needs. You want to see someone get really uncomfortable really fast? Tell them you have a sibling with a mental disability after they say the word ‘retarded’ and then just stare at them with a fixed smile and anger in your eyes until they can’t look at you anymore, mutter an apology, pay for your meals for life, buy you a car and so on and so forth. What’s funny to me is that nowadays most people seem to accept my brother right away but you can tell they have questions they don’t know how to ask. They don’t want to offend anyone, but I have found that at when we worry so much about offending someone we also miss out on the opportunity to understand them by avoiding the topic altogether. Whether they mean to or not, people have some stereotype of how a disability works and what a family with kids with disabilities must be like. This silent politeness keeps them from knowing what is true and what is false. So I figured I would address some of the stereotypes and misconceptions that I have experienced most often in my lifetime as a sibling of someone with a disability.
Please note: these are things that I personally have experienced and would like to address as well as some stuff friends of mine who also have siblings with mental disabilities. I did not take a census or do scientific research, so please don’t use these points as a ‘How to’ guide, just take it as a perspective you might not have experienced yourself. Also, if I say something that sounds kind of funny or sarcastic, it’s ok to laugh at it, I’m just trying to keep it light.
Misconception #1: Sibling with disability = Requiring all the parents’ time, attention, and resources, leaving any other children abandoned and without love.
Here’s something that always seems to shock people; I was not neglected as a child. Sometimes people look at me like I’m grievously wounded after I tell them I have a brother with special needs. They often have a misconception that I must have had to fend for myself because my brother was so needy that my parents had absolutely no time for me or my older sister. That’s bogus. My parents made time for all of us. Sure there were times when my brother needed more attention than the average kid but there were plenty of times when it was the complete opposite. My brother was just as content to look at books or watch TV as any kid and babysitters LOVED him because he was so low maintenance. Seriously, childhood (mine, my sister’s AND my brother’s) was normal, probably more normal than most.
Misconception #2: Having a sibling with a disability instantly makes me a saint.
I am not someone to look up to or expect inspiration from just because of whom I’m related to. One time I was at the park with my brother and after watching us play for about five minutes, this woman came up to me and said “you are SO brave!” and just walked away. I have never been more confused in my life. Brave? Brave for what? Did I rescue someone from a burning building without realizing it? No, this random stranger just saw me playing with my brother and assumed I was doing something noble. I’ve got news for that lady, it doesn’t work like that. Call me brave for donating blood even though I hate needles, call me brave for attempting to drive and then parallel park a suburban in downtown Portland on a Friday evening. Don’t call me brave for playing. You want inspiration? Talk to my friend who runs a home for impoverished children in Kenya, or my friends who are doctors, nurses, social workers, or wildlife conservationists. To that lady in the park: I’m not judging you or saying your standards for inspiration should be a lot higher than me. Just understand that I was simply playing with my brother. This does not mean I never contemplated pushing my brother down a well, or locking him in a trunk and shipping him to Timbuktu the first chance I got (I thought about doing this fairly often actually, for reasons that will be explained in the next bullet point).
Misconception #3: Having a sibling with a disability is difficult because they have a disability.
Growing up, having a disabled sibling was difficult not because of his disability most of the time, but because he was my sibling. Siblings love each other (hopefully), but they also hate each other at times. This is true for any sibling relationship. We get in each other’s space, we fight over the remote, we fight over doing chores, we fight over the last slice of pizza, we fight because sometimes that’s the only thing keeping us from dying of boredom. Yes we are both adults now, but we still fight about stuff, just like 99% of siblings out there. On the flipside of that we have some of the best times ever! We watch movies together, we play games, we joke, we laugh, and we read together, we look out for each other, we take care of each other (yes my brother takes care of me sometimes), and we make each other better people. Because that is what siblings do, lovingly hit each other until something good comes out.
Misconception #4: Because I grew up with it, I’m so used to my brother’s disability that it doesn’t bother me.
Most days are good days, but it can really suck sometimes. My brother can’t do a lot of things that a regular guy his age can do. One of the things that is the hardest for me is his inability to handle a break in routine. If we tell him we are going camping for a weekend he will fixate on it, not out of excitement but out of major anxiety. We were in Disney World a few years ago (the happiest place on earth, right?) and all my brother wanted to know was when we were going home. He obsesses over food and when his next meal will be and that only gets worse when there is a break in routine. It is a constant battle to try to get him to understand that change can be a good thing. It is hard to see how much it stresses him out. When going to Hawaii feels like the end of the world to him, that’s hard. When he doesn’t understand that the experiences that we fight to give him are to show him we love him and want him to be with us as a family, that’s hard. A day trip to the beach means endless promises and reiterating the point that we WILL come home and we WILL have food at some point, that’s hard. The stress, the anxiety, the obsessing over change that you can’t explain to him in terms he understands is constant. There is no way to stop it, there is no magical way to change it, and it’s just the way he thinks. That’s hard.
Misconception #5: My brother’s disability is a burden all the time.
There are always two sides to a coin. Dealing with a disability isn’t always fun, but honestly, sometimes my brother’s disability can be really great! My brother’s disability gives him a great capacity to love life and others. My brother can experience joy more fully than anyone I know. He has the best laugh on the planet, take him to the movies and his big guffaw will have the entire audience laughing simply because he’s laughing. He is kind to everyone, and I mean everyone. He loves kids, and animals and they love him back (unless you are talking to our cat who hates all human contact). He hates to see people or animals hurt or in trouble. He likes to be helpful, mowing the lawn is his favorite. When he is excited about something it is contagious and you can’t help but get excited too (even if it is just because it’s pizza night). He can be so gentle, he doesn’t have a mean bone in him. He always wants the good guys to come out on top and he always cheers for the underdog. He loves sports, batman (the old school Adam West version), nachos, and peanuts on the beach. He is a GREAT basketball player, I’ve seen him make at least six half court shots. My brother is hilariously funny, always ready to make you laugh. He is quick to forgive and holds very few grudges (he is human after all). His disability is not his whole identity, but it can sometimes show us the purest form of his identity.
Misconception #6: I would give anything for my brother to be normal.
Excuse me *Climbs onto philosophical soapbox*
I will be honest, it’s really easy to think about the negatives. It is really easy to think about the ‘what if’s. It is really easy to get in the mindset that to be ‘normal’ is to be better. For years all I could think about was what having a ‘normal’ brother would look like. But then I realized, there is absolutely no good definition of normal. Everyone has something, some kind of quirk that makes them a little off the mark of normal. In that sense, my brother is no different, I am no different, and you are no different from any other person, just our quirks are different. My brother is healthy, happy, and he loves his life and those in it with more love and sincerity than most people could imagine. Why would I want to change that?
*clambers off of philosophical soapbox*
Is having a sibling with a disability easy? No, but how many things in life are easy? I have learned that trying to be positive helps me when it feels especially difficult, but sometimes it just doesn’t work. I am very involved in my brother’s life and vice versa so sometimes it can be a daily, if not hourly challenge to see the big picture. Sometimes you just want to talk about anything besides your sibling, sometimes you have to talk about them or you’ll go crazy. Every person who has a sibling with a disability has a different story. Some have it harder than others (I readily admit I have it pretty easy with my brother). Some dedicate their lives to their siblings, others try to be completely separate, even breaking all contact. Please do not judge those siblings who leave or think they have only selfish intent that is often not the case. It took me a long time to realize that my identity was not bound to my brother and there was a lot of anger and frustration tied up in figuring that out.
This post is probably way too long and rambling, but it is difficult to narrow down what to say and how to say it. There are a lot of questions that I have left unanswered and if you have any that you are dying to ask go for it. Most people in the disabled community (parents, siblings, the actual person of subject) are willing to answer legitimate questions, if they are asked with respect. Understanding is an amazing tool for gaining acceptance and most people with mentally disabled family members just want you to understand and have their family member accepted for who they are. I felt the most at ease as a kid when I knew people understood my brother and knew where I was coming from. So ask questions! Just be sure to ask about favorite restaurants, movies, what they think of the current weather etc. as well, because discussing the same topic all the time can get tedious for any person…unless that person is my brother and the topic is Batman or sharks.