Luke’s Story – The Stigma

Soon after Luke started wearing his hearing aids, we found ourselves at Target. It’s one of my favorite places, so I can’t say that I’m shocked that I was there with him. Anyway, it was the first time Luke had been out of the house with his hearing aids. I think I assumed that nothing would change except that Luke had some new digs in his ears. I was wrong. It was instantly obvious that people were curious about what was going on. I noticed people staring and kids asking their parents what the aids were. It wasn’t a huge difference, but it was definitely there.

Luke has had his aids for a few months now.  I realize that it hasn’t been all that long, but I’ve noticed things in that time.  As much as I hate it, there’s a stigma that accompanies Luke because of his hearing aids.

The day Luke got his hearing aids, we came home and showed them to Anna.  She asked what they were, so we explained that Luke couldn’t hear as well as she could and that his hearing aids help him hear better.  She nodded and then told us that she wanted a pink pair.  Anna never brings them up, although if you ask her what’s in Luke’s ears she will say ‘those are Lukey’s hearing aids’.  To her, it’s normal. Actually, to the kids in Luke’s class – his hearing aids are normal.  They don’t mess with them or point to them.  They never did.  They just accept it. God bless young children.

We were at a restaurant one night for dinner.  Across the room, I saw a middle-aged couple talking about Luke.  I could actually hear some of the things they were saying.  Luke was furiously signing ‘more’ to me so that I would feed him something.  Now, we didn’t teach him any signs.  His daycare teaches simple signs to all the kids.  Moog doesn’t want Luke to rely on sign language, and instead learn spoken communication.  So, we will sometimes do the signs back if we sandwich them between the spoken word.  At some point while Luke was asking for more food, I signed back to him.  Apparently the couple was still watching, because I heard the husband say ‘well, she just signed to him so he must be deaf’. I had to laugh to myself a little bit.

The other day, our daycare was doing school photos.  I carefully picked out outfits and brought them to the school so the kids would look nice.  I was telling Luke’s teacher about his outfit, when she asked if we wanted his hearing aids to be removed for his picture.  I kind of jerked back.  I know she didn’t mean it in an offensive way, but why would we do that?  We aren’t ashamed of his aids.  It’s a part of him.  We would never hide that.  I quickly told her to keep his hearing aids in.

I’ve noticed that the majority of the reactions come from adults and children that are old enough to realize that Luke’s ears look different, but too young to know that you shouldn’t stare or point.  The parents are usually quick to stop them, and then they walk away in embarrassment.  They shouldn’t be embarrassed.  It’s natural.  Luke’s ears are different – there’s no denying it!  I do wish people would ask, because I’d love to tell them about Luke and how amazing he is.  My plan is to tell older kids that Luke’s hearing aids give him super powers! However, I understand why people opt to avoid it and I never know if I should offer an explanation.  It’s the elephant in the room if you don’t know us. Now, I do get a ton of supportive smiles from other moms in passing. But, I’ve also found that adults have a hard time knowing if they should ignore Luke or interact with him. Usually, Luke handles it by relentlessly flirting with whoever is around us.  The shields fall.  It’s the best ice breaker.  Lock up your daughters, Luke is a heartbreaker!

Let me say, I’m not offended when people look or say things – it’s just a strange sensation.  You know people are talking about your child and I never really know how to react.  I don’t want people to feel differently about Luke because of his hearing aids.  His aids don’t define him.  And, I don’t want people to feel uncomfortable around him because they are unsure about his hearing aids.  Mainly, I don’t want Luke to feel like he’s different or flawed or strange.  I don’t want his aids to define his self-worth.  At this point, he is innocently immune to comments and stares.  While I know that ‘the talk’ is coming at some point, I pray that he is guarded from it for as long as possible.

Advertisements

5 thoughts on “Luke’s Story – The Stigma

  1. Whether it is right or not, I think my opinion is the best thing to do is offer an explanation…to the kid who is staring/asking. Adults – they really ought to know better. But being an adult with a kid who stares/points/asks…and then the adult doesn’t really answer, just slinks away in embarrassment, that to me teaches the kid that there’s something embarrassing about what they just saw. If you see it, and it isn’t like you have to go charging across 3 aisles to get to the kid and explain, I’d say something to the kid if I were you- something sweet and down at their level “I noticed you were looking at Luke’s ears – aren’t they a cool color of blue? He has these neat little toys for his ears that help him hear better!”…older children can get a more detailed explanation, but that way they get an answer for their questions, not taught that it was wrong to ask or that what they saw was wrong. I’ve had Adelaide ask about wheelchairs or walkers, or the arm canes, and I usually try to explain it to her rather than ignore it or chide her for asking. I don’t know if that’s better or not, but so far I’ve experienced people being grateful that I addressed it rather than ignoring them. If you don’t do it in an offensive/chiding/whatthehelliswrongwithyourmomthatshewon’tdothis kind of way, I’d welcome it as a parent, if it were my kid asking and me not knowing what to do…. but that’s me!

  2. Whether it is right or not, I think my opinion is the best thing to do is offer an explanation…to the kid who is staring/asking. Adults – they really ought to know better. But being an adult with a kid who stares/points/asks…and then the adult doesn’t really answer, just slinks away in embarrassment, that to me teaches the kid that there’s something embarrassing about what they just saw. If you see it, and it isn’t like you have to go charging across 3 aisles to get to the kid and explain, I’d say something to the kid if I were you- something sweet and down at their level “I noticed you were looking at Luke’s ears – aren’t they a cool color of blue? He has these neat little toys for his ears that help him hear better!”…older children can get a more detailed explanation, but that way they get an answer for their questions, not taught that it was wrong to ask or that what they saw was wrong. I’ve had Adelaide ask about wheelchairs or walkers, or the arm canes, and I usually try to explain it to her rather than ignore it or chide her for asking. I don’t know if that’s better or not, but so far I’ve experienced people being grateful that I addressed it rather than ignoring them. If you don’t do it in an offensive/chiding/whatthehelliswrongwithyourmomthatshewon’tdothis kind of way, I’d welcome it as a parent, if it were my kid asking and me not knowing what to do…. but that’s me!

  3. Hey,

    I didn’t get hearing aids until college, but I am exceptionally familiar with the stigma surrounding the HAs and with deaf people in general.

    I’ve had plenty of times where, with my HAs, people just assumed I was completely deaf (I’m in the mild hearing loss range) and stared in shock when I verbally engaged a clerk at a store or a McDonald’s employee for my favorite burger. Other times, I’d get people slowing down their words or exaggerating mouth movements based on the false assumption that I can lipread much better if you make it excruciatingly difficult.

    At the same time, I have had people automatically use whatever sign language they know. Now, that would have been a problem, except I had become fluent in ASL over the course of college, so I appreciated both their effort at leveling the communication playing field and their understanding, even if it was a bit presumptuous, given that not all deaf/hoh know ASL.

    On the other hand, without my HAs, I experienced the joy of surprising people and putting them on the spot with a unique situation. Perhaps it was my overuse of the term deaf as I applied it to myself (since I identified heavily with Deaf culture during school), so that when I asked for someone to repeat what they said because I’m a little deaf, they generally decided it wasn’t important, but only after the initial shock wore off.

    Most people tend to act less extreme, but I also find that a wearing HAs can sometimes deter people who would otherwise engage in conversation. So sometimes I wore them with the intent of hearing, but ended up pushing people away. Admittedly, I also sometimes wore them, but turned them off, because I knew it would prevent random small talk.

    MJ

    • Hi MJ!

      Thank you so much for sharing! I love hearing your side of the ‘stigma’ that comes with hearing loss and hearing aids. It’s such a different aspect than what I see – really eye opening! I hope that Luke is able to see the playful side of his hearing loss and aids.

      Thank you again for sharing!

      -Lisa

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s