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?
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.
The book of Exodus contains the story of Moses leading the Israelites out of Egypt, where they were slaves, so that they could travel to and inherit the promised land. When the Israelites are first freed, they rejoice and worship the Lord. But, it doesn't take long for them to realize that, although they are headed for the promised land, the journey will not be easy. They're traveling through the desert. They're tired, they're hot, they're hungry, they're thirsty. As the Israelites face these less than ideal circumstances, their perspective becomes distorted.
"In the desert the whole community grumbled against Moses and Aaron. The Israelites said to them, “If only we had died by the Lord’s hand in Egypt! There we sat around pots of meat and ate all the food we wanted, but you have brought us out into this desert to starve this entire assembly to death" -Exodus 16:2-3.
These people were freed from slavery and they want to go back to being slaves! They forgot, in a relatively short period of time, how bad their life in Egypt really was. But God didn't abandon them, despite the fact that they had a limited, distorted perspective and felt frustrated. Instead, He lovingly provided for His people, even in their lack of faith.
"Then the Lord said to Moses, 'I will rain down bread from heaven for you. The people are to go out each day and gather enough for that day' Exodus 16:4.
The bread that the Lord provided is called "manna". Notice that God didn't provide the Israelites with an abundance of manna; he provided for them each day with what they needed for that day.
This concept still applies today. While I have never eaten bread that rained down from Heaven, I find that God provides me with different forms of "manna" in my daily life. And I'm learning to notice these provisions when I'm in the most difficult circumstances. This modern day manna comes in many forms: a Bible verse that speaks to me in a way that it never has before, an encouraging word from a friend, a random act of kindness, extra time to rest--the possibilities are endless!
The reason I compare my experiences with the manna in the Old Testament is because God provides me with exactly what I need to get through that day rather than an abundance to store away for the next difficult day. Why does God offer his provisions in this manner? I know, for me, it reminds me that I need to take life one day at a time. And, also, that I need to be completely dependent on God. In my weakness, He is strong. Those two truths make it possible for me to continue to navigate this crazy life.
It's so comforting that God never leaves us or forsakes us, even when we're emotional or irrational. Even when we don't feel His presence, He is with us. That's the Truth we need to stay focused on always--that is our candle during our darkest days.
Right now, I'm hanging out at my parents' house and watching "A Charlie Brown Thanksgiving" with my little sister. This is a pretty typical Thanksgiving tradition for us, but, for the most part, Thanksgiving is going to be quite atypical for me and my family this year.
I have a fairly large extended family, so I've grown up with a lot of holiday traditions. Though small things have changed over the years, we are still typically all together, so the small details didn't really make much difference.
But, sadly, this year, we will not all be together for Thanksgiving (The only other year we were not together for Thanksgiving was about 3 years ago when I was in the hospital). My Grandpa has been in the hospital for about 5 weeks now (he did come home at one point, but it was for less than 24 hours). We hoped that he would be able to come home today, but we found out this afternoon that that's not going to be possible. And then, my Grandma was very sick today and is now in the hospital as well. They are keeping her at least overnight and, since tomorrow is Thanksgiving, we will be having a Thanksgiving without my grandparents.
We all know that Thanksgiving is about giving thanks and having an attitude of gratitude, right? When our circumstances are less than ideal, it becomes significantly harder to find things to be thankful for. However, God instructs us to give thanks in all circumstances. So, even though I am sad that my grandparents will not be at the table with us this Thanksgiving, I will be praying for both their recoveries and taking time to reflect on what I'm thankful for.
Here's a short list of some of the things I'm thankful for:
1. My family
My close-knit family is my biggest support and one of the biggest blessings in my life.
2. My friends
I am very blessed to have friends that have stuck with me through thick and thin. We've seen each other through the worst of times and celebrated together in the best of times. I consider my close friends to be part of my family and I'm so, so grateful for them!
3. My job
I am extremely thankful to have a job that accomodates my needs as a person with disabilities. They're hard to come by!
4. My apartment
Just a couple years ago, I wasn't sure if I would ever live on my own again. But, I have been living in my own apartment for almost a year and a half now; God is good!
5. The goals I've accomplished in 2017
When New Year approaches, I tend to reflect on the year that is soon ending. I set some goals in the beginning of 2017--you can read about those here. When New Year gets closer, I'll talk more about how I've done with my goals, but suffice it to say that I took my goals more seriously this year than ever before. I'm so grateful for all the new things I was able to learn experience!
What are your Thanksgiving plans? Do you have any new traditions this year? Or, are there any traditions that you've stopped this year? What are you thankful for? Let me know in the comments.
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.
It's been awhile since I've done a video post. So, I decided to continue my series "The Chronic Chronicles" by addressing the topic of unethical doctors. (This video is in English and is Closed Captioned).
I had my normal 3 month GI appointment scheduled for yesterday, but then refused my doctor's services after he treated me very unethically. In this video, I share my experience as well as advice on what to do if you have been or are being treated unethically by any doctor.
This past week, on Thursday November 2nd, I was incredibly blessed to be able to hear Sheila Walsh speak AND to meet her after the event! My best friend attended this event with me. My best friend's dad was kind enough to drive us all the way to Fredricksburg, Virginia so that we could attend. It took us about 7 hours to get there from here in Upstate New York.
This particular event was called "The Beautiful Broken Life Tour". Sheila Walsh just released a new book called "In the Middle of the Mess", which is what prompted this tour. Sheila Walsh has written several exceptional books, but this book is different from the others she has written. In this book, Sheila shares some very personal details about her life that she has not shared in the past.
Sheila Walsh has been open about her struggle with clinical depression for years. However, she had not, until writing this book, addressed her struggle with chronic suicidal thoughts. She has taken one of the most taboo topics in our society and tackled it head on. The need for this type of honest, raw discussion about mental illness within the Church is so desperately needed. As a person who also struggles with depression, I am profoundly grateful to Sheila for being brave enough to tell her story both in her books as well as over and over in person.
Here is a video of Sheila discussing her battle with depression for those who have never heard her story. It's extremely powerful and I highly recommend it!
As if hearing Sheila speak (and being super close to the stage) wasn't already amazing, I was able to meet her after the event! She signed my brand new copy of her new book, took a picture with me and my best friend, and even talked to me for a few minutes. When I told her that I was a fellow sufferer of depression, she wrote in my book "Don't give up." It meant so much to me that I cried (it wasn't the first time I cried during the event but, small detail.)
This event was accessible for me. In fact, it was perfect for me because the setting was fairly small and intimate, which lessened my anxiety. For those with more prominent physical disabilities, I didn't see any reason that the event wouldn't be accessible. However, there was no ASL interpreter, which was unfortunate. My cousin was considering attending the event as well, but she is Deaf and, understandably, did not want to attend without an interpreter. Hopefully this is something that can be arranged for future events. I hate for anyone to miss out on the awesomeness that is Sheila Walsh because of a language barrier!