To Label Or Not?
Have you ever thought about the impact labels have on society? I think they can be very powerful, in so many capacities. One type of label I never thought about before I had Emma, was labels for children with special needs. To be honest, even after Emma received her diagnoses, I didn’t realize the impact labels would have on her and on us. And frankly, we use them for good and for bad. Yes, I have taken advantage of labels because I feel like that’s the compromise that we can give. For example, those special seats for people with disabilities? We’ve sat in them. In fact, we had 2nd row seats to the Wiggles Concert (aren’t you jealous?) because I purchased seats reserved for those with disabilities. My daughter has a visual impairment…I WILL use those seats, thank you. My daughter was wearing a half-body cast (I’ll tell you that story another post), floor seats work out perfectly, thank you. And in my head I’m always thinking about how we can get to the front of the lines at Disneyland!!
And then there are the labels that precede the child. I know this from 1) being a teacher and 2) being the parent of a child with special needs. Before teachers ever meet the students, they have their file that lists every disability the child may or may not have. There was a point where I thought the more labels she had, the worse off we were. Of course no one wants their child to be labeled negatively, but again it’s how you use those labels. Finding the “opportunity” in every label can be important to your child’s success and opportunities given to them. For example, when applying for the Department of Developmental Disabilities, I had to surrender all sorts of paperwork “proving” Emma’s labels. And do you know what that got her? PT (Physical Therapy), OT (Occupational Therapy), and Speech provided by therapists that come to the house. It also qualified her for Respite and Habilitation hours, which are fancy ways of saying “babysitter”. A good friend of mine told me early on that with every diagnosis she receives, she can potentially receive more help and therapy to aide her progression. I have tried to look at it from that light ever since.
There is another way of looking at labels that has changed for me. I don’t have a special needs daughter…I have a daughter with special needs. Emma’s special needs don’t define who she is. Yes, they are a part of her, but there are so many facets to my little Emma! Did you see the video of her dancing in ballet? She’s a natural! Okay, maybe not quite yet, but you can see how much she loves it! Other things that Emma loves include reading books, her dogs, and her family. She loves to run and laugh and play with her friends at school. Do people know she has special needs? Yes, once they spend some time with her. But her labels don’t need to precede her in life…in my view that puts limitations on her. I don’t want her to think she has limitations, or that she can’t do whatever she wants to do.
I will get off my soap box now. Was I on a soap box? My goal in this is to encourage and uplift parents of kids with special needs. It’s not doom and gloom and if we can see things in a different light, it’s not all that bad!
I want to hear from you…how have YOU been impacted by labels?
Emma, age 18 months
My answer to the topic’s question is “Yes, to label.” It’s good that you learned it early in Emma’s life. Children and adults with special needs require special services. Unfortunately, the services may not be available without labels. Anton didn’t have most of his labels for too long. Now in preparing to after-school life, we are dealing with consequences. Only two years ago Anton was formally labeled with Autistic Spectrum Disorder, even though we knew that he was on a spectrum since he was 4 years old. Then, we discovered and labeled his brain malformations. We are currently pursuing labels of “Intellectual Disability” and “Musical Savant” which should help him in further education, employment and living arrangement.
However, are we always fair to others when using these labels? We often notice how unethical others are in regards to our children with special needs (and people with disabilities in general). Unfortunately, we are often jealous to the rest of the world, including our friends whose children do not have any special needs. I sometimes even hear “Oh, if only she had to deal with what I am dealing with!” Do we really wish our friends would have our problems? Why don’t we always see that their own problems are big enough, different from ours, but sometimes even bigger than ours? Sorry, that’s the whole different topic for discussion. Anyway, let’s admit that we are not always moral either. Being a person with disabilities or having a child with disabilities does not relieve us from being decent to others.
Jessica knows us well, but for those who are going to read my comment and don’t know my son Anton: he is 18 years old, totally blind, mentally challenged and musically talented. We live near Boston, MA. Anton did not have any formal labels other than “Blind” or “Handicapped” until he was 16 years old. That one label gave him handicapped parking placard. Does he really need it? No, Anton has no trouble walking. Do we use it? Oh, yes! If there are no empty regular parking spots, we’ll take the handicapped one. Wouldn’t you? Is it fair? No, it’s not. If you think about who really needs convenience of a handicapped parking – it’s often not people who formally have “handicapped” label, but people whose legs or feet hurt, who have trouble walking, many elderly people, some pregnant women. Blind people don’t drive themselves. Therefore, they usually have someone (a driver) to help them with orientation. People who can’t walk use wheelchair anyway, why would they need the closest spot to the entrance? There are exceptions in every scenario, of course. Some blind people have a hired driver, who they don’t want to rely on as a guide, and for some people using wheelchair, there is a difference in how far they have to ride in it. My Mother needs handicapped parking placard more than my son, but she can’t have it. So, how can we make it fair?
Anton had never been to Disneyland, because his parents hate standing in lines, and don’t see a reason for Anton to skip lines as a person with disabilities – he has no more trouble standing in line and waiting than any other child. Also, Disneyland for Anton would not be different from any other amusement park, because he has no vision at all. But, if he had usable vision like Emma does and all non-visually impaired people do, and if he couldn’t stay still in line (which a lot of kids without labels can’t do), would we use his privilege given by label? I don’t know. I always blush when Anton is invited to cut a line in the airports because of his white cane. In most cases, we refuse: I can’t walk Anton around women with crying toddlers in their arms, or a 100-year old traveling couple supporting each other and leaning on their canes.
However, there was no way we could refuse VIP sits (front row) at Luau, a Hawaiian feast, in Big Island, Hawaii – we didn’t reserve or ask for special sits, but were sited there because of Anton’s white cane. While it would make perfect sense for someone like Emma, it was meaningless for Anton, but VERY MEANINGFUL FOR US. These seats should be given to someone like Emma. But, none of our neighbors seemed to have special needs – so, at the end we didn’t feel bad at all. Emma should have FIRST row seats at Wiggles Concert. If it were in my power, I would reserve first row on each and every show to people with low vision only. I don’t see why a person with paralyses for example should be sited upfront in preference to everybody else. People using wheelchairs need accessible transportation, access ramps, maybe a seat close to the door in a concert hall, and many other things, which also should not be forgotten, but not a seat in a first row on a show.
My point is that needs of people who have special needs are different. We should use our judgment to identify if my child really has a need in certain area, or there are people who equally or even more need certain opportunity. It’s very tempting to always use labels for better services, but not always necessarily, and sometimes even harmful to others. We want to teach our children to be thoughtful and carrying for others – not only expect others to care for them.
Julia,
Thanks so much for your comment! I agree with all of it, and you have given new food for thought! I appreciate your input on my site!!
Hugs to the family,
Jessica
My comment was longer than your original article – sorry about it. I love this picture of little Emma!