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!
It's very rare that I let anyone see anything from my personal journal (ok, journals. Yes, I have multiple!) But I thought this was worth sharing. As I was struggling with my own health, mental and physical, one of my friends asked me "what can you think about right now?" We talked about reading the Bible and listing things I am thankful for. We also talked about how helpful it is to get our thoughts down on paper rather than relying solely on mental lists.
I opened my Bible to Psalm 119 and started reading where I had left off. This verse stuck out to me: "My comfort in my suffering is this: your promise preserves my life" (Psalm 119:50.) Well, it was certainly no accident that I was at that particular point in that particular Psalm this evening!
I wrote that verse down in my journal, but then felt uninspired to write anything else. So, I started leafing through my journal, backwards, looking for circled verses. Ever since I read "The Circle Maker" by Mark Batterson, I've made a habit of writing down verses that contain one or more of God's promises, and drawing a circle around the promise (this was the author's suggestion, hence the title). Essentially, I was looking for promises to cling to while I was feeling needy. These are a few of the verses that stuck out to me.
"The Lord will save me, and we will sing with stringed instruments all the days of our lives in the temple of the Lord" Isaiah 40:30.
"Let them give thanks to the Lord for his unfailing love and his wonderful deeds for men, for he breaks down gates of bronze and cuts through bars of iron" Psalm 107:15-16.
"Therefore, He is able to save completely those who come to God through Him, because He always lives to intercede for them" Hebrews 7:25.
These verses, along with a few others inspired this list I made in my journal. I wanted to focus on different characteristics and attributes of God that I know are true because of His promises.
Now, I want to be clear--I'm not saying that everything is fine and dandy now after that worship exercise. Yes, it was helpful. Yes, I believe it glorified God. Yes, it was comforting. Yes, it got my mind off other things for awhile. However, that doesn't mean that my problems went away after one session of quiet time and worship. But, I placed my mind on things above and not on earthly things. I took my thoughts captive to make them obedient to Christ. Those are two things that God commands us to do. I can thank God for helping me to be obedient even when my emotions are not following suit; that alone is proof to me of growth in my life and that is my victory for tonight.
Here's the list I made in my journal. I've since thought of a few more things to add to it. I pray that these attributes of God bring you comfort and encouragement, as they have for me.
Description of the list for blind and low vision readers:
The title of the list is God. . .
The bulleted list reads:
is strength life
intercedes for me
takes care of me/provides for me
lives within me
shows me grace and mercy
loves me exactly as I am, unconditionally
wants me to have an abundant life
listens to me
speaks Truth to me
wants me to enter His gates with thanksgiving and His courts with praise
has a plan and a purpose for my life
In my last post, I shared about the annual women's retreat that I attend. I focused on where the event is held, why it's special to me, how the event is structured, and accessibility. And then the post was already so long that I didn't feel I could talk about what I learned at the retreat this year. So, that's what part two is for! If you haven't had a chance to read the first post yet, you can read it here.
The ladies who plan this retreat pray fervently about who they will ask to speak each year. They never give the speakers a topic; they simply tell them to share whatever the Lord has put on their heart. The speakers generally don't communicate with each other about their messages prior to the retreat. However, there never fails to be multiple recurring themes throughout the entire weekend! This is one of the many ways that I am assured that the Holy Spirit is at work and present at this event.
These were some of the recurring themes this year:
1. The Holy Spirit is underrated.
Our first speaker on Friday night set the tone for the weekend with a great message about the Holy Spirit. She spoke about how vital the Holy Spirit is to our lives as believers and how so many churches don't teach enough, or at all, on this part of the Trinity. Then, other speakers throughout the weekend continued to build upon this theme. One thing that the Friday night speaker talked about that really stood out to me was that we can (and should) pray directly to the Holy Spirit. I had honestly never fully realized that! I always thought I had to pray to the Father to guide me with the Holy Spirit. But, the Holy Spirit is 100% God, just like the Father and Jesus. So, why wouldn't we pray directly to Him? This has really changed my prayer life!
Verses referenced by the speaker:
Acts 1:1-8 (emphasis on verses 4-5)
2 Corinthians 3:6
2 Corinthians 5:5
2. We need to surrender our thoughts to Christ
On Saturday morning, one speaker's message was about "thinking about what we think about". Much like Friday night's message, this speaker's points continued to be emphasized throughout the rest of the weekend by the other speakers. This speaker's main point was that "we create mental imagine of thoughts that have no basis in Truth [and] these do not produce fruit." And, the anecdote to this is to "marinate ourselves in Truth". I love the way she phrased that! This speaker referenced Philippians 4:6-8 (with an emphasis on verse 8). This verse must have came up at least 3-4 other times over the rest of the weekend!
3. We must encourage and build one another up.
One of the speakers on Saturday evening spoke about peacemaking and encouraging, which largely tied into the Saturday morning speaker. She also referenced Philippians 4:8. She began her message with a powerful quote: "How do you know if someone needs encouragement? If they're breathing." This quote fit perfectly with the speaker that had gone just before her who stated how vital it is that we be kind to one another because, most of the time, we have no idea what people are going through! People can look like they have it all together while being a physical, spiritual, and/or emotional mess on the inside! We need to pray to be able to see people as God sees them!
There were so many other important things spoken about over this weekend, but, for the sake of brevity, I tried to pick the three themes I felt were most pervasive throughout the entire event. Have you ever been on a retreat, either a one day event or multiple days? How was your experience? Would you attend another?
Every fall, I attend a local women's retreat. It's a fantastic event where women of all ages, from different backgrounds, and from different churches all come together for a weekend of growing in our relationships with each other and our relationships with Jesus. The event starts on Friday evening and ends in the late morning on Sunday. This is my third year attending this retreat. The first year I attended, in 2015, I made the decision to surrender my life to Christ sitting on the couch in the cozy fellowship hall directly across from a beautiful fireplace. I had about five women surrounding me and praying for me. We ended up praying and talking until about 1:00 in the morning! I had gone to church and considered myself a Christian for as long as I could remember, but I knew that I was forever changed that night. This annual retreat has become very special to me and I consider it my favorite event of the year!
The venue is a beautiful Christian retreat center located right in the middle of the beautiful mountains here in upstate NY. It has an incredible view--especially in the fall!
See? Wouldn't you love to wake up to that in the morning?
The event is structured roughly like this:
Friday night, between 5:30-6:30 PM, everyone arrives. You are given your room assignment and then you have time to unpack and settle in. Then, you can go back down from the dorms to the fellowship hall for some fellowship time before our service starts at 7:00.
Our opening service is usually about 2 hours. We start off with praise and worship, and then we listen to a speaker. After our opening service, we have an ice cream social and hang out for a bit before going back to our rooms.
On Saturday we have a morning session that is similar to the Friday night session, except there are two speakers. Then, after lunch, we participate in workshops that we chose ahead of time. There are two workshop sessions and we get to pick which workshops we want to attend. After dinner, we have an evening service. Then, like Friday night, we have snacks and hang out until we go back to our rooms (there are breaks in the schedule but, for the sake of brevity, I'm just giving you the highlights).
Sunday morning, after breakfast, we have a wrap up session. Then, there is a typically a prayer session and people can choose to stay to pray for people, ask for prayer, or both.
This event does very well with accessibility, considering its size and its attendees.I feel very accommodated in terms of my personal disabilities. The event is structured in such a way that I can rest if needed. There is also a pervasive non-judgmental attitude that makes me feel that I can take a break if I need to, which may not seem like a big deal, but it really helps me a lot!
Physical disabilities can be accommodated as well. There are rooms available that are downstairs. Furniture in all areas can also be moved around to accommodate for equipment, if need be.
Accessibility for Deafness and blindness has not been largely addressed because there hasn't been a need thus far. There have been one or two times that someone was hard of hearing and they were offered a seat in the front and all the speakers made sure to use microphones (these HOH individuals did not sign). Because of the attitudes of the women on the planning team, I know that they would do everything in their power to meet any new accessibility needs that may arise.
I had originally planned to talk about some of the things I learned over the weekend, but this post is getting lengthy already. So, I think my next post will be a part two where I will share some of the topics that the speakers addressed and what I took away from it.
Part two is now published! You can check read it here.
One of my goals for this blog is to start creating more content about mental illness. I have struggled with depression and anxiety for as long as I can remember. It is amazing that in our current time, there is still such a stigma surrounding mental illness; It is still a taboo topic. I want to be a part of changing that. I want people to know that discussing mental illness is no different from discussing any other kind of illness. Mental illness is a real illness; it's not a bad character trait or a personality flaw.
One of the reasons that it can be challenging to raise awareness about mental illness is that these illnesses are usually invisible. Most people with mental illness "look healthy". You can't tell I have depression and anxiety by looking at me. Most people with mental illness have been told they don't "look sick" more times than they can count. The only way we can make mental illness visible is if we speak out about it. We have to stop hiding behind the stigma that society has created and refuse to be treated as second class citizens.
So, in this post I'm going to share 10 things that happen to me when I'm in a particularly bad depressive episode. My depression never goes away completely, but there are times when it gets worse. These are some of the things that happen during the worst episodes (this list is, by no means, exhaustive)
1. I am depressed.
This seems obvious, right? The problem is that many people don't understand what depression really means. Many people think it is the same as feeling sad when the reality is that sadness is just one fragment of depression. One of my biggest pet peeves is when people say "everyone gets depressed". That is not true. Everyone gets sad, but not everyone gets depressed. There are also differences between situational depression and clinical depression, but that topic will need a post of its own.
2. I am exhausted.
I'm pretty much always tired; that comes with the territory when you have major depression. But in particularly bad times, the fatigue gets even worse. It is overwhelming and anxiety-producing. Sometimes, l fear that I am literally going to fall asleep standing up.
3. I can't concentrate.
I have a hard time concentrating on just about anything. My daily Bible devotions, my job, blogging, reading a novel, etc. My mind wanders and usually produces thoughts that fill me with anxiety. I am too busy putting out those fires to have any head space left to concentrate on anything else.
4. I can't run simple errands.
Simple things like going to the store, the pharmacy, the post office, etc. seem impossible. I can't possibly get dressed and go out in public. What if I run into someone I know and I have to talk to them? Am I awake enough to drive? The list of thoughts surrounding going out for any reason is pretty much endless.
5. I cut back on, or stop, engaging in my hobbies.
I find myself reading less, blogging less, and practicing signing less, among other things. Partially because I can't concentrate on them and partially because, even when I do get engaged in them, they don't bring me the joy and satisfaction that they typically do.
6. I cut back on socializing--a lot.
Just like getting out of the house to run errands, the list of reasons my mind can come up with for not leaving the house to socialize is daunting. What if they get mad because you can't pay attention? What if you just start crying for no reason? What if you get sucked in and they you can't leave when you feel like you need to? Do people even want to be around you?
7.I am more irritable.
Things that normally wouldn't bother me make me incredibly anxious or angry. This is not only unpleasant for me, but for all those around me.
8. I don't cook for myself.
Breakfast for dinner happens a lot. Cereal, toaster waffles, etc. Pizza on a wrap that can be put in the toaster oven for 5 minutes is also on the menu frequently. I have zero motivation to cook a full, balanced meal.
9. I clean significantly less.
Just like with cooking, I have no motivation to clean my house. The mess will start to make me anxious, but I still feel I can't possibly get up and clean. And, cleaning and leaving the house on the same day? Forget it!
10. I feel guilty.
I feel guilty because of the burden I put on the people in my life when I'm in a bad depressive episode. I need a lot of help with things that I feel I shouldn't need help with, and that is an unpleasant feeling.
Do you struggle with mental illness? Are you a caregiver of someone with a mental illness? What do you wish people understood about your struggle?
I shared this post in the linky down below. Check it out to find some other blog pages that you might enjoy!