Communication and accessibility are basic human rights.
Will you join me in the fight for equality?
Will you join me in the fight for equality?
With the holidays quickly approaching, many of us will be attending get togethers with family and friends. Many of us look forward to sitting around the table or standing around socializing with our loved ones. However, these types of gatherings can be difficult for people who are D/deaf or hard-of-hearing (HOH).
At these types of gatherings, background noise, such as music or many people talking at the same time, is inevitable. For D/deaf and HOH people who have some residual hearing, background noise makes it more difficult (if not impossible) for them to utilize their residual hearing to help them understand speech. Also, if you're standing around with a group of people or sitting around a table together, the speaker tends to change frequently. People jump in and comment on what someone else just said and they will probably talk over each other at times. In this scenario, by the time the D/deaf or HOH person has time to figure out who is speaking and to focus on them enough to try and understand what they're saying, someone else has already started talking. This can leave the D/deaf or HOH person exhausted and frustrated--they are putting in so much effort, yet they may be unable to get meaning from or contribute to the conversation.
The good news is, you have the power to make your loved ones who are D/deaf or HOH feel more included during group gatherings. Here are four tips to remember for holiday get togethers--and for group settings in general.
1. Repeat yourself if asked
I have heard it said that the biggest swear word in the Deaf community is "never mind". If a D/deaf or HOH person asks you to repeat yourself, DO NOT say anything along the lines of "never mind"," I'll tell you later", "it's not important", etc. The person is showing that they want to know what you are saying and they felt safe enough to ask you to repeat yourself rather than just pretending they understood you the first time (which I know some D/deaf and HOH people do a lot). Shutting them down by refusing to repeat yourself is a huge slap in the face.
2. When repeating doesn't work, rephrase.
If you've repeated yourself more than once and the person still hasn't understood what you've said, odds are that you're going to have to try something different. This is a good time to rephrase what you said. When you rephrase, the person may be able to pick up more words and understand you.
3. When rephrasing doesn't work, write or type it.
If rephrasing doesn't work, a good next step is to either write down what you've said on a piece of paper or type it on your phone and show it to the other person.
4. Look up the sign--Google is your friend! (If this person uses sign language)
If you google "[word] in ASL", you will probably get a decent sign to help the other person understand you. Even if you can't sign a whole sentence, just a few key words might be enough to give the D/deaf or HOH person some context to figure out what you're saying. Also, utilize any sign language you already know. For example, if you know the alphabet, try spelling a word or two out.
5. Let the D/deaf or HOH person call the shots
This is super important! If you don't already know how the D/deaf or HOH person prefers to communicate, ASK them! It is much more polite to ask than to assume you know what works best for them. For example, maybe they don't read lips and/or don't use their voice and would prefer that you just write or type back and forth rather than having you repeat yourself or rephrase what you're saying. Or, maybe they don't use sign language, so relying on some combination of the first three tips is the best option. But, again, don't assume. Ask the D/deaf or HOH person how they prefer to communicate and let them lead the way.
Honestly, when all this talk about net neutrality started, I was pretty clueless. It took me awhile to wrap my brain around the concept of net neutrality and why people were upset and/or angry that it is in jeopardy. I didn't want to jump on the bandwagon of being outraged without having a basic understanding of the issue, so I did a little research. If you want to read up on the issue for yourself (and I encourage you to do so!), check out this website.
I'm not an IT expert, but, based on the research I've done, the fact that there are big companies out there trying to end net neutrality is scary! People are right to be upset about this--especially people who belong to the disabled or the Deaf community. Basically, net neutrality is a principle that prevents internet providers from making certain websites difficult or impossible to access by either slowing down the internet speed, charging customers additional money to view those sites, or just blocking them altogether. The reason that internet providers want this ability is so that they can promote websites that support their company in order to make more money.
For example, in a world without net neutrality, an internet provider could have a deal with Yahoo. If you tried to go to Google to search for something, you would be redirected to Yahoo. If you wanted to use Google instead, you would have to pay your internet provider more money. Or, they may just block it altogether, forcing you to change internet providers (if you even have that option) in order to access the search engine of your choice.
Right now, the FCC has introduced a bill that aims to end net neutrality. The end of net neutrality would be the end of the internet as we know it. The internet is supposed to be a place where anyone can access any content they wish and express themselves freely. The end of net neutrality would mean the end of that freedom.
So, what does all of this have to do with the disabled and Deaf communities? Deaf people, for example, would have their choice of interpreting services limited. Many Deaf people use VPs (video phones) to make phone calls. If net neutrality were to end, they would have little to no choice in their service providers; they would have to use whichever one has an agreement with their internet provider or pay an additional fee. Blind people would face the same problem with magnification software, voiceover programs, etc.
As for people with other disabilities, many of us supplement our incomes with blogging, YouTube videos, etc. This could be severely impacted by a lack of net neutrality. This doesn't only mean a loss of an income source for some people, but it also means it will be harder to spread disability awareness. Many disabled people struggle to be understood and to have their story heard; the internet provides a platform for us to express ourselves and communicate with other people that we can relate to who we may have otherwise never met.
Here is a video of Chris Haulmark (Kansas state senator candidate explaining the importance of net neutrality in ASL (with English and Spanish captions).
Whether you have a disability or not, the proposition to end net neutrality is concerning. Everyone deserves access to information through the medium of their choice and to be able to create content on the platform of their choice and have a fair chance of being heard. The issue of net neutrality goes back to one of the basic principles of this blog--communication is a human right and no one should be allowed to limit our communication.
When you continually fight for a cause (or multiple causes), it can be easy to get discouraged when you see what you perceive as a lack of progress. In this post, I'm going to focus on the cause of language equality. Specifically, that all Deaf children are given full access to ASL (or the sign language of their country) as their first language from birth.
Full access to ASL from birth only happens for 1 out of every 4 Deaf children. Getting language access to those other 3 out of 4 children can seem like such an insurmountable goal. There are doctors telling scared parents that their only option is for their child to use hearing aids or a cochlear implant and learn to lipread and speak. There are parents that become obsessed with the idea that they must "fix" or "normalize" their Deaf child. There are even entire organizations *cough* Alexander Graham Bell *cough* that are committed to denying the devastating effects of language deprivation.
Access to ASL for deaf children just makes sense. While some children may learn to speak as well, they will still never be able to fully access spoken English. How can giving someone a partial language set them up for success later in life?
So, we have to be even more committed than the forces working against us. Even more committed to continually educating ourselves. Even more committed to raising awareness. Even more committed to donating our time and/or money to organizations that promote language access. How do we stay committed? How do we keep fighting every day for what we know is right?
I was watching a few videos the other day of Deaf babies communicating in or being exposed to ASL. Little hands get me every time. I felt warm and fuzzy. When I see those types of videos or read those types of stories I know that that is the way it should be. It reminds me what I'm fighting for. The day I stop fighting will be either 1.) the day I die, or 2.) the day when every single Deaf child has full access to sign language from birth.
Now, I'll share a couple of my favorite videos with you. There are plenty more as well, so feel free to search away!
This video of sweet, 22 month old Ayla is one of my favorites! This is what I'm fighting for! This is what all Deaf children deserve! There's also other videos in this series of Deaf babies signing ASL that are equally as heartwarming and fabulous.
And then we have this video of a Deaf grandmother teaching her Deaf granddaughter ASL. How sweet is THAT? This grandmother is passing on her language and culture to her granddaughter and it's beautiful.
"If you're not familiar with the Deaf community and Deaf culture, you may have never heard the term "hearing privilege" before. Hearing privilege highlights the things that hearing people do on a regular basis without giving them much thought. For Deaf people to do the same activity, it requires effort and planning; it's not something they take for-granted like hearing people do. That is my basic definition, but I want to let the Deaf community do most of the talking here. So, here are some examples of hearing privilege from Deaf individuals.
1. "You know when you have #HearingPrivilege when you don't have to worry about closed captions being on so you can follow it. Or having to ask the person sitting next to you to repeat the announcement that was said over the PA. Or having to base your friendships off who has the patience and time to be able to fill you in on what's going on around the table. (For those who does this for me, you mean the world to me.)"
2. "#HearingPrivilege is being able to accept a last minute invite and not have to go without access."
3. "#HearingPrivilege: listening to the radio and hearing about upcoming local events that nobody bothers to tell you about because they assume you won't be interested."
4. "#HearingPrivilege is not having to know that your colleagues feel economically burdened by your access and presence."
-Joseph Hill (obtained through Lisa Cryer)
5."#HearingPrivilege is my kids being able to take part in every aspect of our family: conversations over dinner, overhearing phone calls with Comcast, listening while the doctor talks to me, the privilege of 'selective hearing'. You can't know how much peripheral learning happens within a family until you meet people who didn't have access to any of it."
-Cameo Hunsaker (obtained through Lisa Cryer)
6. "#HearingPrivilege is asking if a 3 year old reads lips."
-Valerie Snowflake (obtained through Lisa Cryer)
7."#HearingPrivilege is not dreading family events (or any events in general, really) just because of communication barriers."
9. "#HearingPrivilege is not having to ask the person interviewing you for a fast food job to stop turning their head from you when talking."
10. #HearingPrivilege is being able to go to conventions and conferences on business and not feeling lost in conversation between others.
11. "#HearingPrivilege is saying " Never mind, it's not important".... and not feeling the affect."
12. "#HearingPrivilege is having access to live TV... Live."
13. "#HearingPrivilege is knowing what your classmates say regarding the topic during class."
14. #HearingPrivilege is not having strangers tell you that you need a device attached to your body to be "fixed".
- Lisa Cryer
15. "#HearingPrivilege is skimming past all of these posts because they don't apply to you personally."
If you are hearing, how much privilege do you feel you have because of it? Do you take a lot of things for-granted in your everyday life that would be a lot more challenging if you didn't hear?Did seeing these example make you more aware of the things you take for-granted?
If you're Deaf, can you relate to these example? What other examples would you add?
Let me know your thoughts!
What is International Week of the Deaf?
The International Week of the Deaf (IWD) is celebrated each year during the last full week in September. It was first initiated in Rome, Italy in 1958 by the World Federation for the Deaf.It is celebrated in September to commemorate the first meeting of the WFD
Why is IWD important?
The WFD states that The International Week of the Deaf is "the only week in a yearthat sees highly concerted global advocacy to raise awareness about the Deaf Community on different levels." Each year, there is a theme for the week. This year, the theme is "full inclusion with sign language". The WFD expands on this theme by stating that "the full social inclusion of deaf people is possible when sign language is recognized and used widely within the society." Below is a video (in ASL with English captions) where I describe what that statement means to me. I will also discuss why IWD is an important time for Deaf ministry organizations, such as DOOR international.
The importance of resources from Deaf people:
Here's all the websites I mentioned and gathered information from. I encourage you to check them out and get an even broader perspective on this very important week for the global Deaf community. My perspective is limited by the fact that I am hearing. I highly encourage you to also look at these resources made by Deaf people for Deaf people!
I've decided to get a new vlog series going. It's been awhile since I've done any vlogging, and I think it's about time I get back into it. This series, "The Chronic Chronicles", will discuss my experiences living with various chronic illnesses. This first video discusses what it's like to live with Cyclic Vomiting Syndrome (a rare, chronic disease with no known cure). These vlogs will be in ASL, but, even if you don't sign, I've got you covered. There will be an English transcript posted below the video here on the blog as well as in the comments section of the video on YouTube. Enjoy the new series and please feel free to ask questions or share any of your own experiences!
Transcript: Hi Everyone! Today I'm going to discuss a chronic illness that I have called Cyclic Vomiting Syndrome. That name is long, I know, here it is again. The short name is CVS, so I'll use that now. Ok, CVS sucks. You have probably never heard of CVS because it's rare and most doctors haven't even heard of it. I have gone to the doctor and told them "I have CVS" and they say "what's that?" and get very confused. It's very frustrating! I was born with CVS. When I was a baby, I had problems with vomiting. All babies do vomit, but mine was very severe. The doctor tried many different things, but none of them worked. My mom stopped breastfeeding and tried many different formulas, but that didn't work. I got diagnosed when I was 22 years old. Yes, for 22 years I had no name for my illness. A few doctors tried, but they couldn't come up with anything. What is CVS? It's kind of like migraines in your stomach; it's weird. It's also connected to migraines in your head; I have both. Sometimes, I have them at the same time, and sometimes they're separate. There is very little research done on CVS because it's rare and there's not a lot of funding. Nobody wants to pay for more research; it sucks! Some of the research has caused some doctors to think that CVS might be a mitochondrial disease. That makes sense to me because I'm always very tired, and mitochondrial diseases cause tiredness. Doctors used to think that only kids could have CVS, but that's not true. Now they know that adults can have it too. Sometimes kids grow out of it, but sometimes they don't. Like me; I've had it my whole life. What happens when I have a CVS attack? Obviously, one thing is vomiting. But, sometimes, if I take my medicine early enough, I can prevent the vomiting. I will still feel sick, but I won't vomit. It definitely helps some. Other symptoms include: headaches (like I said before, the headaches and the stomachaches are connected), nausea, pain in my arms and legs--especially my legs; they will hurt a lot! When my legs start hurting, I know I need my medicine because a CVS attack is coming. Also, my hands get really weak. I can't hold anything; my hands are useless. Also, my eyes are very sensitive to light. If I'm on the computer for a long time, sometimes I will get a headache and my eyes will get blurry. Also, this can happen if I am in a room with too much light or flashing lights. Then, I have to rest my eyes. Sometimes I use my eye mask to help my eyes rest. I'll show you. It's beautiful right? I got that at the dollar store! CVS in unpredictable. One week I will be fine and be doing all my normal activities: work, socializing, church, etc. Then, other weeks, I will be exhausted! I will nap in the afternoon for 4 hours sometimes when I'm having a CVS attack. If I'm sleeping that much, I know that an attack is coming and I need my medicine. I'm always more tired than most people, but sometimes it's worse, and I know an attack is coming. When I have a bad week, I can't leave the house much. I'll only do the things I have to do. I will go to work and then come back home and sleep, and that's it. No socializing, no going to the store, which is annoying, and I can't get any errands done, which is also annoying. My hope is that more people like me, living with CVS, will express their feelings and encourage more awareness so that people can get diagnosed sooner than I did. 22 years, wow! Now, I'm 27. Yeah, I've known for 5 years now. Also, I hope that the research can get more funding. I don't know if that sign (research) is conceptually accurate. Yeah, I wanted to share my chronic illness experience. Thanks for watching, bye!
1. I make eye contact when speaking or listening to people whenever possible.
2. I turn the sound on videos off!
3. I use captions!
4. I’ve learned about other differences people have besides Deafness.
5 I’m more expressive!
Do you have a skill or a hobby that you find makes differences in your daily life? Comment and tell me about it!
I often get asked why I started learning ASL in the first place and what there is about it that makes me stick with it. I have shared some of that information in my post called "My ASL Story", but I wanted to dig a little deeper into the reasons that I have such a deep love for ASL and Deaf culture. I actually came up with 10 reasons, but with the descriptions of each reason added in, it seemed it may make for a too lengthy post. So, I decided I will do a series. I'll start with 5 reasons, and then, in my next post, I'll share 5 more! For now, here's 5 reasons, in no particular order (with the exception of the first one), why I love ASL and Deaf culture:
1. ASL helped me have a closer relationship with my cousin.
The whole reason I started learning ASL 6 years ago was to communicate better with my cousin. She has been Hard of Hearing (HOH) since birth. I live in New York and she lives in Virginia, so we don’t see each other as often as we would like. But, as we’ve gotten older, we’ve been able to have a stronger relationship thanks to technology. She was the person who exposed me to sign language. I don’t remember ever seeing sign language until I was an adult. I was just fascinated with the way it looked and how it seemed to really increase her ability to communicate. So, I asked her if it would be easier for us to communicate if I learned ASL. She said yes. And, an ASL enthusiast was born! At that time, I thought I’d only being using ASL to communicate with my cousin. I had no idea about Deaf culture and I didn’t realize the complexity of ASL. I was still under the impression that ASL was just a visualization of English, when it is actually its own complete and complex language, which is totally separate from English. Learning all of these things little by little sparked my curiosity more and more and I desperately wanted to learn more about this new world I was slowly discovering.
2. I have had the opportunity to make many new, amazing friends!
I love meeting new people and socializing with them. Getting involved in the Deaf community has enabled me to make many new friends, both Deaf and hearing, and talk with them about many different topics. When talking to a Deaf person, I have the privilege of talking to someone who is inherently part of this culture. Whether they grew up using ASL and being immersed in Deaf culture, or they grew up oral and discovered the Deaf community later in life, this community, and the language that comes along with it, is their birthright. They can share experiences with me and help me empathize with them on a level that a hearing person never could.
When talking to other hearing people involved in Deaf culture, I enjoy exchanging stories about how we become involved in the Deaf community. Common reasons include having a Deaf family member or friend, coming across Deaf people in their workplace and wanting to communicate with them, love for the language, wanting to pursue a career that involves using ASL, etc. As two hearing people, we are both part of a community that is not our own. We are the minority, and we are often able to have conversations about how to be a part of the Deaf community in the best possible way, which means respecting cultural appropriation. That is, acknowledging and respecting the fact that ASL belongs to Deaf people and respecting their cultural and linguistic wishes.
3. Deaf culture encourages deeper relationships than hearing culture.
In the hearing world, we typically just introduce ourselves with our name. It’s often considered rude to ask multiple questions when you first meet someone. However, the Deaf world is quite different. A typical introduction consists of your name, your age, where you’re from/ where you live, what you do (your job, what you go to school for, etc), and your connection to the Deaf community if you’re hearing (Deaf family members, CODA, interpreter, student, etc.) There may even be things I’m missing! In my experience, people seem to be more genuinely interested in getting to know each other in the Deaf community than in the hearing community.
4. ASL helps me express my emotions
I am, by nature, a very expressive person. But English can often be a very reserved language. Using a lot of facial expressions or movements when you speak is often seen as “weird”, “annoying”, or some other negative trait. But, in ASL, facial expressions and movements are critical. It’s impossible to understand the language without them! Your facial expression and body movements can change the entire meaning of what you’re signing. In Deaf culture, the more expressive you are, the better! I often feel more free to express myself and get my point across in ASL.
5. ASL is a much blunter language than English. People say what’s on their minds!
In the hearing world, we use the “sandwich approach” to offer criticism to others. We’ll say something positive, then gently insert our criticism, then say something else positive. The Deaf world is much blunter; people tend to keep it short and sweet! This is often mistaken for rudeness by outsiders, but is accepted as normal by the Deaf community and typically is not offensive. Although it can be intimidating upon first engaging with the community, it can really make things a lot simpler once you get used to it. I’m not saying you can’t be rude in ASL, because you absolutely can. It just looks different than rudeness in the hearing world.
In this vlog, I discuss the exciting experience of teaching a HOH man and his wife basic sign language. I know my own signing is far from perfect, but I am still able to give them the ability to communicate better, so I intend to do that! As always, the video is captioned in English so all can enjoy. I also tried to point out signing mistakes I noticed in my captions. I really gotta hit the book on grammar, I know! But, I've been practicing a lot!
My first vlog in a long time! Yay! Really hoping to do more of these! The video is in ASL (although not signed perfectly; forgive me! I'm working really hard on my fluency right now!) and captioned in English so everyone can enjoy!