A lot of things about living with ALS frustrate me, but probably nothing as much as being treated differently. By differently, I don’t mean accommodating my obvious disabilities, like holding doors open for me, communicating via email or text rather than by calling, or coming over to my house to visit rather than going out. I genuinely appreciate those accommodations…no, I’m talking about being treated like I have lost my intellect. I am fully aware of what people are saying and can respond using my tablet. There is no need for anyone to speak louder or slower, because I cannot speak.
I was recently at the hospital for a small procedure. Cory got me out of the car and into the wheelchair and my caregiver began to push me inside. I noticed a middle aged woman looking my way, and as we approached, she said “Ooh how fun!!”, in a voice normally reserved for speaking to very young children. I wish I could have replied to her, because trust me, both being in a wheelchair and visiting the hospital regularly IS NOT FUN. I realize that she wasn’t intending to be rude, but sometimes it really is better not to say anything.
I get really irritated when medical professionals who work with ALS patients respond in this way. A couple of weeks ago I had an appointment with a health care worker who I have seen before, and the whole time she used that same “toddler” voice and even some actions to accompany her words, when speaking to me. At one point I actually laughed out loud, thinking to myself, Did I look like this when I spoke to little kids? 😉 After the visit one of my caregivers asked, “Was it just me or did she talk to you like you were in preschool?”.
I have been very fortunate that my family, friends and caregivers understand that my mind hasn’t been affected, and always communicate with me as normal. When a technician came to do some work on my tablet he instantly starting asking questions of my caregiver. She had no idea and told him he needed to talk to me. I understand that people may feel uncomfortable, but it is important that alternate forms of communication are accepted.
It is crucial to me that I carry on as I did before, running the household, organizing the kids’ schedules and being in control of my health journey. I appreciate it so much when medical offices and other businesses allow me to book appointments and ask questions through email. Cory keeps me in the loop on everything, scanning our mail and other documents to me. The kids pretty much always come to me when they want to go out, maybe because I am less likely to say no as I’m only the dispatcher rather than the one doing the driving. Lol. All of these things combine to make me feel like my life is still my own and I don’t take that lightly.
Until next time…
I could just imagine your frustration at ignorant people but if you could would probably still be polite to them verbally. There is no excuse for health workers not to educate themselves and treat you like an adult however. It’s always great reading your updates! And don’t worry Cory loves driving😄.
I hear what you’re saying Leanne! In all honesty I would totally be enraged if people started treating me like that. I grew up with 2 very close family members having different abilities, so I was exposed to what that meant from a very young age. There was nothing wrong with either of their intellect so I always assume that the person inside the “outside package” is intelligent. To be honest I’ve always treated kids that way too, because even as a kid, being the youngest of 4 kids, with 6,8,&10 years difference, I hated being talked down to.
This is only my belief but I think most people respond to those with different abilities because of a lack of empathy & a lack of exposure, even in the healthcare profession. They honestly don’t know how to act & because there is a disconnect between what they do & being a ‘real’ person. They makes fools of themselves in their attempts at being “caring”. Bedside manner is not taught & there are those who just don’t have it, period!
We on the “normal” side of things just don’t realize how “abnormal” we truly are. We’re blind to our lack of abilities in all sorts of areas, communication being one of the biggest hurdle between all humans. And that is consistent across the board, whether you’re able to speak or not. Unfortunately we simply don’t see where we ourselves fall short & few are evolved enough to allow others to speak into where we could improve without taking offence.
I don’t know if you get any of the messages that I post to you. It would be nice to hear from you if you are so inclined. It would be really good to hear your thoughts about the things I comment on. A conversation. I don’t know if that’s possible or not but I just thought I would put it out there.
I’m reminded about Stephen Hawking having the intellect that he had & the fact that he resided inside an ALS body. It didn’t stop him from getting his thoughts out to the world. I pray that you have a larger & larger forum to speak your thoughts out to the world around you. God Bless you Leanne. B