Femme de Chem Transcripts
Femme de Chem Chats Ep 11: Interview with Steve Frank about the DeafBlind Shabbaton Event
[Black Screen with text] This episode was done entirely in ASL using TASL and Pro-Tactile. Myself, [Kit] is being voiced by a female SSP, and Steve Frank is being voiced by a male SSP.
[Changes to a white background with Kit and Steve Frank sitting chairs. Steve Frank is working with an SSP using TASL to facilitate communication. Since Kit's TASL experience is limited]
Hello! My name is Kit, and welcome to Femme de Chem. I’m here now at the DeafBlind Shabbaton event in Baltimore, and I’m interviewing Steve Frank. The reason I’m interviewing him is because he has come to this Shabbaton many times.
SF: Technically it’s Reisterstown.
Kit: Thank you. So, I’d like to start and say hello. Steve Frank, tell me about why you’re interested in coming to this Shabbaton.
SF: This DeafBlind Shabbaton actually started April 23-25 in 2010 at the Pearlstone retreat center. In Reisterstown Maryland, which is close to Baltimore. So, it was a small group, but it was new and everyone enjoyed themselves. They went to all the workshops and looked around and got a good education, and lots of opportunities to socialize with each other. And then, for the second time was two years later, in November 2011, it grew a little bit to 13 individuals. It started to grow, and they made a few changes at that time. And then for the third Shabbaton, that was in June 2013. I believe at that time there were 17 people who came who were DeafBlind. And then two years ago was in June 2015, and there were 19 DeafBlind, and there were four people who came all the way from Israel. Now I believe who are from Israel this year. Two of them are twins who are DeafBlind, and I met them, and I really enjoyed meeting them. And then, last night, yesterday and last night, we learned about the history of the Shabbaton since 2010 and there are a few people who have been here every year since 2010, one is Jeff. And then there were 6 original people who were at the first Shabbaton who are here. Several DeafBlind people who live far away, and you know it’s only two nights, so it’s a short event. And you know it costs a lot of money for people to fly from far away. So really people would prefer for it to be 3-4 nights but for the interpreters and SSPs, you know ever since it’s come together really well. And some people go to another DeafBlind camp before they come here. But here we’re able to pray and socialize with each other, there’s workshops. So, it’s a good balance pf activities. And you get to pick, sometimes the prayer is optional.
Kit: I’d like to ask, why is that Shabbaton important for the DeafBlind Jewish Community?
SF: There are several people who are involved in organizing. It’s not my idea to start it, it was Sheryl Cooper, and Rabbi Lederfeind, it was really their idea. They said DeafBlind people need to have access to a Jewish education and socialize with each other, that’s very important. And so, and leadership opportunities too. And so, I remember the first one, I see a lot of younger folk who are 18, 19, 20 so I’m hoping that it will keep going in the younger generation. Some people might not be comfortable with the prayer, I don’t know. If you’re not comfortable, nothing is forced on you. So, you can sit and interact with each other and socialize. You don’t need to be orthodox to pray. And there is also plenty of time to sit around, and are able to learn about your Judaism, and rabbis, and there are Jewish people who are here. And we learned the prayer the Shema [they say the prayer] Shema Yisroel Hashem Eloheinu Adonai Echad [Hear, O Israel, the L-rd is our G‑d, the L-rd is One.] And I remember yesterday with eh Rabbi who was teaching us all the prayer. And we were all able to try to do the prayer together. And then the shema we learned yesterday [recites prayer again] we all said it together.
Kit: So, when people go home, is it hard to continue their learning?
SF: When I go home, for me, I really enjoyed the Shabbaton the whole weekend, all the activities, meeting everybody, meeting friends here. I remember yesterday Sheryl Cooper passed out copies of prayers that we were able to read, and bring them home to read when we had the time. And it was printed on both sides, and Sheryl Cooper was able to read it at pass it out so we all had copies in braille. Three or four years ago, the Rabbi also gave out a huge stack of prayers. That you know, I really didn’t have time to read. I didn’t have a lot of time to read it so I kind of put it to the side. And I only read a few pages of that and then other campers.
Kit: Do you think more DeafBlind Jewish people might come in the future?
SF: That’s a really good question. This year is the fifth time, so yeah, I do hope that people continue to come every two years that we have it. Maybe there are other things that are happening, so maybe that’s why people can’t come. But there are obviously many that do, and many people keep coming. There are also many past participants that didn’t return. You know some come one year, and don’t come the next, and you might have to do more advertising. I had a few recommendations, you know, ways to get the word out more through social media and Facebook, ways to contact more DeafBlind Jews. It’s amazing that people all the way from Israel were able to come with Ushers syndrome. And some people aren’t able to afford it, but there are two DeafBlind boys from Israel here for the first time. And that was great to meet both of them. And I hope to see them again in two years. And you know they’re going to be in college, and I don’t know what their plans will be later on. Gallaudet is quite expensive, so we’ll see what their situation is two years from now.
Kit: What is your favorite part of the Shabbaton?
SF: Well, my number one favorite part was morning prayer. First what happens is morning prayer, there’s a prayer service in the morning, and then you have the game called Jewpordy. And then we had opportunities throughout the day to learn, and workshops. There are several workshops planned, and socializing opportunities. That’s part of it, to be able to walk outside on the farm, and walk around and see parts of the farm, see animals, and goats. At one point, there were goats born so we were able to fee the baby goats, and they ate out of your hand, it was very cute. And then I think that was the first time I had ever seen a baby goat before, so I really enjoyed that part of it. I like walking around the area, and center. Prayers, honestly, I don’t pray that much, not my focus, but there are orthodox here who pray.
Kit: My last question for you. Sometimes people are nervous about coming to an event like this, what would say to those people?
SF: Yes, I remember when I went to the DeafBlind camp, four years ago, and then I asked if there are other DeafBlind Jews here, and they said yes there are a few. I said Hi, and I introduced myself. I asked them if they knew about the DeafBlind Shabbaton, so I was able to tell them about it. I got their name, and their email, and I sent it to Sheryl Cooper, and then you know I go to the DeafBlind camp in other states, like Washington state. And I asked them do they know about it? And I shared their contact information, through Sheryl Cooper, and I have two more DeafBlind camps that I go to, one is in Seattle called Seabeck, and the other one is in Atlanta. So, I try to stand up in front of everybody and ask if there are any Jews there and to give them information about the Shabbaton. I think that is a good way to get the word out. Is anyone afraid, or nervous about coming? I don’t know. You know, maybe the prayer part intimidates people. But I tell them that the prayer is not required, it’s really just about enjoying each other and if you’re religious, or not very religious, if you’re reform or orthodox, it doesn’t matter, it's open to everybody. You know in 2010 the Deafblind who came were orthodox and they were praying, and I didn’t really understand what was happening, but I came back again. Maybe some of the people didn’t come back because they misunderstood what was going on. But I hope for the future that DeafBlind are able to continue to interact. People who pray, pray, and people who don’t can interact with each other. There’s plenty to do here. Everyone should just try. What-ever they like.
Kit: That’s all for me, thank you so much.
SF: You’re welcome, you’re welcome!
Kit: Thank you, and thank you for helping with interpreting, the SSPs are wonderful. And I’m excited to tell you more about this even later.
SF: Thank you, I love you! Bye! Love you!
Femme de Chem Chats Ep 10 Wedding Planning Tips for Brides with Disabilities
Hello! And welcome to another episode of Femme de Chem Chats. I’m Kit, your host, with your weekly musings on life, the universe, but mostly on disability. It’s wedding season! I know I I’m going to my first wedding of the season this Thursday. And I did, once upon a time though I am now divorced, plan a wedding as a bride with a disability.
Planning a wedding is stressful for every bride, but it is definitely more stressful when you are a bride with a disability. Because we’re trapped between these societal expectations of bridal beauty, wedding customs, and guest expectations. And disabled brides certainly aren’t going to fit into any conventional image of the flawless beautiful bride that you see in magazines. And while I know many confident women, I’m not one of them. And I struggled a lot with my body image and so much with cultural norms, and I’m a people pleaser, and that was really hard for me. So, you know what, I’m going to give you my list of ways to make your wedding planning process less stressful.
Number 1, give up the idea of the ideal wedding. Just throw that out the window. The faster you chuck that the better your wedding experience will be. I wasn’t going to get the gorgeous pictures of me reading a prayer book, which is really common in my community, and I wasn’t going to be able to walk around my reception by myself. I needed to have help, and I needed my guide dog. These made other people kind of uncomfortable, and therefore it made me super self-conscience but! It’s so important to just push through this. This is about you, not them.
Number 2, someone is going to say something really insensitive… and it’s going to make you cry. So, one time over Shabbat someone was telling a seemingly innocuous story about their beautiful wedding and this moment when they saw their chosson (groom) walking down the stairs to meet them, and they saw their face. And just how beautiful of a moment that was. And I became convinced that it was impossible to really enjoy my own wedding without the visual experience and I spent a week crying about it. Weddings are not about the aesthetics. They’re about the emotions. So, these moments like that, that able-bodied brides have, they’re not gonna be your moments. You’re going to have different moments! And that’s ok. It won’t be any less meaningful, it will just be different.
Number 3, you need to surround yourself with people who understand that you are a bride with a disability. Don’t choose your little sister you need to choose people because they are going to support you. If your little sister is going to be a good support for you fantastic. If not, don’t choose her, that’s going to be a problem. I needed people to drive me around during the wedding planning process. What-ever it is for you that you need, that’s ok. Pick people who can do that. I had honest discussions with a lot of my close friends. I said, “Hey, I’m only choosing people who can really be there for me because I have a disability and planning a wedding is more difficult for me.” And that’s what I did. And all of my friends were super supportive, even if they weren’t the [deep epic voice] “The Chosen Ones”.
Step 4, go back to step one. Just accept, what is. If there are moms and dads, and other family members telling you to do one thing and you physically can’t, SAY SOMETHING. This is your wedding, and if there is one time everything should be accommodated for it’s your wedding day. Don’t bend, make others bend to you. I needed braille books, I needed a friend to be with me when my chosson wasn’t, I needed a hall with an elevator because it was very hard for me to go up and down stairs in a big poufy dress. I needed verbal explanations of where my family was located, or who was coming up to talk to me. It’s more than ok to ask for accommodations. It’s a requirement, on this the day of your own wedding.
If you have serious body image issues like I do, choose who you go dress shopping with very carefully. I did a practice round with just my close friends, who was nothing but supportive for me. And we were able to figure out in a very loow stress way, which dress type looks best, so when I went real dress shopping I was ready. Being blind makes me even more reliant on other people’s opinions because I can’t see wedding dresses very well. But, I was still adamant that I have a dress that I felt beautiful in, and for me this meant having beading or other texture elements to it, so I could enjoy an aesthetic aspect to my dress as well. Whatever it is you need from your dress as a bride with a disability, that’s fine. Tell your group, and if they’re not supportive kick them out. They don’t need to be there, you don’t need that. Being part of the dress team, is a privilege, not a right.
That was today’s episode! Please remember to subscribe! Like on Facebook, follow on Twitter. If you liked this video, become a patron! And help support me. Kit Engl—wait no. Patreon.com/kitenglard. And all of the links are in the description.
Femme de Chem Chats Ep 9 Learning to Navigate a Social Life While DeafBlind
Hello! So, something that I dreamed of doing with this channel is introduce people to what it means to be DeafBlind. Now, because it’s new to me you are getting a kind of like, crash course in DeafBlindness, as I get a crash course in DeafBlindness, and I’m making these videos kind of as I’m learning. So, they’re very ‘on the go’. And something that I’ve really been struggling with since the onset of my hearing loss has been socializing. So today, I want to talk about some of the ways I’ve been dealing with this.
First, I did what everyone does when they are dealing with a sensory loss, and that was to isolate myself. I had just moved here to NJ so I didn’t really know anybody. So, going to events where I wasn’t going to be able to see or hear people was truly terrifying to me. And I think I started to venture out sometime in August or September when I started to work with an orientation and mobility instructor, who taught me how to cross streets safely and get around with my new hearing loss. And most of the social activities for a while I did with a friend of mine, who took ASL with me last summer. Shout out, by the way! Because she’s fantastic. She’s been a great support helping me socialize again. And the last couple of months I’ve really been working on expanding my tiny social circle.
Now, I’ll be honest, I do still have some anxiety when I do go certain places. These places tend to be when there’s going to be limited hearing potential for me. So, if I go to an amusement park, or if I go to the beach, or something where there is very low lighting, or difficult lighting, and there is poor hearing quality. The anxiety only gets upped when I’m going with people who don’t know American Sign Language because my fallback communication isn’t there, so that means I might have to rely on Print-on-Palm or POP.
So, for me the hardest part of learning how to be DeafBlind has been navigating these social settings and accommodating for myself. Something I knew how to do as a blind person but not necessarily with the dual sensory loss. And, I’m not going to say that everyone is always going to be super accommodating, because not all people are accommodating in all situations.
So, this week, I went outside of my comfort zone, and went to a friend’s birthday party. And where we were all going to go out for ice cream, and then go to a bowling alley. Now, I know, that my friends are always willing to help me and are willing to accommodate for me, but I also know that this is a birthday party where people might get drunk, where there will be a lot of noise, where I wasn’t going to be able to hear anything. And, right now I still get very overwhelmed and very agitated if I am not able to keep up with what’s going on, and I’m still prone to having panic attacks in specific situations. And… I kind of thought bowling might be one of them. So, I decided that for ice cream I was going to be fine and just go with my friends, and that for the second half I was going to seek out an SSP (or support service provider) to go bowling with me and act as a communication support. They know ASL so even though I couldn’t hear, because the music and noise was overwhelming my hearing aids, you know, I had an ASL person there to support me and help me communicate with my friends, to tell me what the bowling scores were, to tell me who was up next, when my turn was, who was doing what, what the group next to us was doing. Just all of that little bit of information, my SSP was there to support me and to give me that information. I was really able to be present and there for my friend’s birthday party, in a way that I found meaningful, and I had fun! And I’m so happy that I went!
When we experience a loss in a sense, or sudden onset of disability, you know, it’s not a marathon, it’s not a sprint. It’s slowly increasing our ability to do things. Now, I’ve managed to get to a point where I can maintain some, a lot of my work skills. So, I can go into work settings, meetings and stuff like that. And that’s great for me. And where the things that have lagged behind for me is really socializing. And… You know what, that’s ok. If you are supporting somebody who is going through a sensory loss, and you are noticing, “Oh, that’s weird. They’re really good in this one area but they’re still really anxious in this other area.” You know what, that happens. There is going to be an uneven amount of confidence, because you can’t work on everything all at once. For me the big deal was getting back to employment, so of course that’s what I worked on first. Where-as socializing took a backseat. So, you know what, if you are supporting somebody, be that support person for them. If they say, “Hey this might be too much for me.” Don’t push too hard. If you think that they really can handle it, say, “You know what, I’m going to go with you, we’ll be there together.” Try to make it comfortable. But don’t push them. Because eventually, it all evens out and it does get better!
I hope you liked this video! Please remember to subscribe, like on Facebook, follow on Twitter. All that jazz. And I will see you later.
Femme de Chem Chats Ep 8 Don't Lose Friends Because of Facebook
[Voice a little stuffy] Hello, and welcome to another episode of Femme de Chem Chats. I’m Kit, your host, with your weekly musings on life, the universe, but mostly on disability. [Top left corner: facebook photo appears] This week I’m going to be talking about Facebook’s algorithm! Because… People take Facebook super seriously and you shouldn’t. [photo disappears] Also, I have a cold. So… yeah.
So, I found out recently that yes, people take Facebook very seriously. And… I don’t know why? I understand this from teenagers when I work with them, because peer approval is extremely important when you’re 16. But I’m a little confused as to why adults take this so seriously as to when people like or comment on their Facebook photos.
Here’s the thing. Not all of your friends on Facebook see your posts. And who sees what, gets flipped around all the time. I’ve manually followed or unfollowed people only to have them disappear or reappear on my newsfeed a couple of months later just because… Facebook says so. Or, more disturbingly, I once tried to block somebody. A childhood bully of mine, had tried to friend me on Facebook, so I put her on a block list. And 5 years later I mysteriously got a second friend request from this person and I again had to block them. So… Yes. Facebook changes this stuff around.
So, how does Facebook decide what you see? The actual algorithm itself is a proprietary of Facebook, so the answer is nobody knows for sure. But basically, Facebook tried to decide what you see based on your likes, your interests, your relationships with people. It tries to show you what it thinks, or what its best guess is, to what it thinks you want to see.
Let’s say you have two people, they’re friends in real life. In this scenario, we’re going to call them Alice [top left drawn image of blond woman holding beakers and wearing a white lab coat] and Juan [top right corner drawn image of brown hair guy holding up a tablet and wearing a camera] . Juan is on Facebook all the time, all day, every day, on his phone [Top left Alice image disappears, being replaced by phone drawing]. He’s commenting [Bottom left Comment image reads from Juan Bombadil: Today I drank that new Unicorn Frap from Starbucks!], he’s posting photos [top right image replaced with unicorn frap picture], he’s liking [bottom right image appears thumbs up like symbol], reading articles [top left image of drawn newspaper], everything. Facebook has tons of information on Juan. [images clear] Alice only uses Facebook [Top left Alice image appears] to maybe talk to family members [bottom left conversation image Alice Ann Wonderland: Will you be at the family reunion BBQ? I want to meet the new addition! Kat Chechire replies: Yes! We’ll all be there!] , or check out new photos from her friends [top right drawn image of cat face appears]. She doesn’t like, she doesn’t comment on a lot of things [all images clear]. There just as much information for Facebook to go on for Alice’s newsfeed.
So Alice and Juan [Alice and Juan reappear on top left and top right respectively] are friends in real life, but Facebook might not necessarily know this. Because while Alice shows up constantly on Juan’s newsfeed because he’s continuously giving it information to have her show up. Commenting on her Facebook status [Top left image Alice Ann Wonderland says: Got new lab equipment! Juan Bombadil replies: Nice!], liking etc [Top right image of drawn microscope with thumbs up like symbol. Then all images clear]. Alice is not giving that information back because she doesn’t use Facebook in the same way. She only uses Facebook, as I said, to connect with family members. So, Facebook is only going to show her things like cute pictures of her new baby nephew [Top left drawn image of a baby appears]. Not… Juan’s new comment, or what-ever [Baby disappears. Image of Juan Bombadil Frap comment reappears].
This mismatch of how people use Facebook and how Facebook tries to make guesses for people happens constantly. And, it’s why it’s not a good idea to put a ton of faith in judging friendships based on how frequently someone is liking or commenting on your posts. This same set-up applies for any groups or celebrities you might be following on Facebook. The more you interact with something the more it shows up. The more you, say, share the George Takei stuff… The more George Takei will show up on your newsfeed. Now, don’t worry. You’re not actually left to the whims of our overlord mark Zuckerberg. You can manually change who you’re following and not following.
Just go to their profile page, and somewhere on there will be a little follow button [image appears center right of George Takei page with a circle around the follow button], you can check it, and un check it. In groups it might be under the joined thing [image center left appears of Deaf Jewish World group with joined pressed, and a circle around unfollow]. You can go in there and change that. So, you can also go in and change your security settings. I recommend that you go through these things once every three months. Because Facebook likes to change things around on users without telling them first.[all images clear]
The real answer is, just don’t put a lot of sock in who comments, and who follows, and who doesn’t. Because it… Ehh… Just depends on… Sometimes it doesn’t even matter how much they follow you. Sometimes it’s just…. Where the winds of Facebook take you. I’ve purposefully unfollowed people, and like I said, they pop-up not that long later. And honestly, at this point, Facebook just asks if I know random Jewish people in New Jersey, because we have 10 FRIENDS IN COMMON! No Facebook, just because I’m Jewish doesn’t in fact mean I know every Jewish person within ten miles of me.
So that was today’s episode. Don’t forget to subscribe to this channel. You can... LIKE ME ON FACEBOOK! And if you want to see me more, you have to interact with my stuff. You can also follow me on Twitter. Find me on Instagram. In the comments tell me about your Facebook misadventures, I’d love to hear them! So, yep. I will see you later!
Femme deChem Chats Ep 7 Cooking While Disabled
Hello! And welcome to Femme de Chem Chats! I’m Kit, your host, with your weekly musings on life, the universe, but mostly on disability. This week I’m going to be talking about cooking gadgets and people with disabilities. Because able bodied people tend to label different types of gizmos and gadgets in the kitchen as being made for lazy people. And this has bothered me for some time.
This subject gets rolled around on Disabled Twitter every once in a while, and that’s because there are so many products out there that get mislabeled by people who are able-bodied as being for “lazy people” or more frequently, for “those lazy millennials.” Crippled Scholar actually wrote an article about this back in March, which I will link to in the description. It was in response to a tweet that went viral. In this tweet, there was an image of peeled oranges in a plastic container on the shelf at a grocery store, that happened to be Whole Foods, and the tweet read, “If only we could find a way to cover these oranges, so we didn’t need to waste so much plastic on them.”
And in the article, Crippled Scholar points out, that prepared food actually increases food accessibility for a lot of people with disabilities. And she would be correct. Food prep is hard for a lot of different types of disabilities because food prep requires strength, and fine motor control, and larger motor control, and use of eyes and ears.
Before the blind and deaf communities come after me in the comment section: YES! It’s possible for blind, d/Deaf, and DeafBlind people to be independent in the kitchen! If you are d/Deaf you can be a professional chef! If you are blind and that is your ambition, have at it! However, the cooking techniques that you use in the kitchen are not going to be taught in your average cookbook. So, things like, it’s not going to tell you to use a talking timer, or a flashing timer, or to put up a mirror so you can look up and see if there is someone behind you. These aren’t things that an average cookbook or cooking class are going to teach you.
Some common things that blind people use in the kitchen that sighted people don’t really think about are george foreman grills, toaster ovens instead of ovens. Something called a hot shot, which allows you to boil water in the exact quantities that you need it. So, if you just need a mug of water, you can pour a mug of water and it heats up that amount. So, you don’t have to worry about pouring and figuring out how much water is in the cup. Because for a lot of people that’s very difficult. Especially people with multiple disabilities. This can get challenging. Things like pre-cut fruits and vegetables are also really important. Yes, it can be safe, and is safe, for a blind person to work in the kitchen. But not everyone can master those techniques, and some people have multiple disabilities, and there’s a lot of reasons they might need pre-cut vegetables. I prefer them because it takes me forever to cut things without cutting my fingers, and so, that’s why I use them. Crockpots are also a great appliance for people how are blind. They are very easy to use. They have dials, instead of digital displays, or can. You don’t have to check on them. There’s very little maintenance involved. So, it’s a great tool for people who are blind who also want to have good healthy diets.
This is specific to the orthodox Jewish community, for me, but in our community, we need to check out leafy greens for bugs. And we do this by putting it under a light and going through it and looking for bugs. I obviously can’t do this because I can’t see very well. So, one of the ways I kind of deal with this is I buy prebagged lettuce that has been prewashed and it comes with a little kosher symbol. And I’ve heard people in my community laugh at why this exists, and why can’t you just check it yourself. And, “oh it’s for lazy people”. Or, it’s for people like me, who literally can’t check their vegetables. And it’s important, because if I didn’t have access to these bagged lettuces with the kosher symbol it would be much harder for me to have fresh produce and I would need to come up with a different system.
Labeling something because you don’t personally see a use for it, as something being made for lazy people, creates a false narrative that there is only one right way to do things. And that’s not true. It’s also damaging to people who are getting used to a new disability. Because nobody wants to be seen as being lazy. So, if you say, “Oh, that hot shot, that’s for lazy people who don’t feel like putting on like a full kettle of water.” That blind person might be like, “Oh, well I don’t want to be seen as being lazy. I guess I’ll just try to boil a full thing of water or try to just you know, do it this other way.” Even if it’s not the best way for them. It can make you very self-conscience when you don’t need to be. People should buy what they need, not what other people think they need.
That was today’s episode of Femme de Chem Chats! Please remember to subscribe to the channel, follow on Twitter, like on Facebook. You can find me on Instagram. Tell me about, in the comment section, what techniques you’re using! And remember to use the hashtag #CookingWhileDisabled you can also use that on twitter, and I’m trying to get that started so if you all want to pick that up, go for it!
Femme de Chem Chats What is Bioptic or Low Vision Driving?
Hello! And welcome to another episode of Femme de Chem Chats! I’m Kit, your host, with your weekly musings on life, the universe, but mostly on disability. This week I’m covering a controversial topic in the blindness community called bioptic driving, or low vision driving. In order to cover this accurately, I did interview somebody who uses this technique. Because my vision is too limited to go out and test it.
Bioptic driving is a method of driving that enables somebody with low acuity to drive safely. So, the driver wears his regular glasses, and in the glasses, is something like this. [holding up a monocular] Which is a far scope, and enables them to see far away. To uses them the driver tilts their head down to see far away, and tilts their head back to see their normal vision—similar to bifocals.
The path to driving is a little bit different. First you need to go to a low vision optometrist in order to get fitted for this pair of lenses. Two, you need to go and have extensive training on this device. And three you finally get to go and take your written exam, work with an instructor on actually driving, and then finally take your actual driving test.
Only 37 states allow for bioptic driving. So, this creates an interesting situation where you can live in one state but not be able to drive into your boarder state. So, for example, two states that I travel between a lot are Pennsylvania and New Jersey. Pennsylvania does allow for bioptic driving where-as New Jersey doesn’t. [Shrug] There’s also a lot of variance between the states that do allow it. Some states have very strict laid out guide lines as to how it works, where-as other states just have a very laisez-faire approach. Florida has kind of an interesting rule where you can use bioptics to drive, but not to pass the initial vision test. [Shrug again]
Bioptic driving isn’t really for everyone. People who have limited visual fields or who are like me and are very light sensitive, won’t find much benefit in this. It’s really only meant for people with low acuity, meaning people whose vision is only impaired due to blurriness.
Driving is a very sensitive topic for most people who have lost their vision as an adult, which is most of the blind community. Unlike me who grew up knowing I would probably never drive, the moment people hang up their car keys for good is an extremely pivotal moment in their vision loss journey. And in the United States getting your Driver’s License is kind of a rite of passage? And this is more true for people who live in rural and suburban community. So, the thought of giving up driving for people in these areas is truly terrifying because it’s a loss of independence.
It’s the reason this is a controversial topic. Not only is it an intellectual discussion, but it is an emotional one as well.
Bioptic driving can potentially help some people keep their driver’s licenses for longer, and for kids simply get their license. It’s a tricky topic. I’m going to quote my source here, and say “It works better when everyone, all drivers, remember that driving is not a right, but rather a privilege.” Drivers need to be aware of their ability levels, and also what optimal driving conditions look like for them. And they need to be honest when a situation might not be safe.
Personally, I’d like to see the United States invest in more public transit infrastructure because, loss of sight would not have near the devastation for people if they also didn’t lose their sense of independence and their ability to get around.
That was this week’s episode of Femme de Chem Chats! If you want to learn more about Bioptic Driving, all the links are in the description. If you have any questions about bioptic driving drop a question in the comment section. Please do not forget to subscribe to this channel, please don’t forget to follow on Twitter, like on Facebook, all the links again are in the description. If you want to see these videos in advance? Become a patron! You can become a patron at patreon.com/kitenglard. Again, all these descriptions are in the links! I will see you later!
Resources for People with Disabilities in STEM
Hello! My name is Kit, manage Femme de Chem and I am DeafBlind. In moving forward with my work, I have created a list of math and science resources. I did this because students, teachers, and scientists all need information on disability resources for mathematics and science. People with disabilities make up 1% of all doctorates in STEM fields. Science education needs to be accessible. If doctors, engineers, scientists, and mathematicians were deaf or were people with disabilities, our communities would be better. Every day we see problems and solutions that able bodied people don’t see. We can change the future. This list is to help you find a career in a STEM field. If you know of more resources to add, please contact me. If you’re thinking about majoring in STEM please visit Femmedechem.com and see the list yourself. I hope for a more accessible future.
Femme de Chem Chats Episode 5 How do I date someone who's DeafBlind?
Hello! And welcome to Femme de Chem Chats. I’m Kit, your host, with your weekly musings on life, the universe, but mostly on disability. This week I’m going to be talking about dating somebody who is DeafBlind. I’m covering DeafBlind topics as they come up in my life, and I recently started getting back into dating, and you know what, there are so many roadblocks in dating when you’re DeafBlind that I never considered before, so here they are. Some of the things that I have pondered about, and I will now impart that knowledge onto you.
So, let’s say you have somebody in your life that you’ve been dying to ask out who is DeafBlind, or you’ve been matched up through a friend, or a website, or however it is this happened. My best advice: ask them what is best for them, but if you’re too shy, this is my list, and I think it’s a good general list of what will be just generally helpful to DeafBlind daters of the world.
Number 1: Find someplace quiet. If you live in a small town like mine, cafes are great. If you live in a city museums are actually really great because they are quiet. Um, in my town we have a little tiny pottery painting place, that’s really great for dates. It doesn’t really matter what you do as long as it’s quiet. Walks in the park work, what-ever. Just, think-think quiet.
Number 2: As if we need help. If your date is DeafBlind it’s best to ask if they need help before gallantly jumping in. I’m usually pretty good about speaking up, but making me feel like I’m not being a burden is really helpful. But Never, ever, speak for me. I might ask you to repeat something that someone else has said to me, like a waiter, but don’t speak for me, I can speak for myself.
Number 3: Be open-minded. Things that seem obvious to you might not be obvious to your date. I found out recently that babies have eye brows, because I can’t see them, and I don’t exactly spend all of my time feeling the faces of my friend’s babies. So, your date might not know that maybe something makes noise, or that something has a certain colour. What-ever it is, just explain it to them non-judgmentally, and just move the conversation along. No big deal.
Number 4: Leave self-consciousness behind. Your date is not going to do things exactly the way that you do. I have to get very close to things to see them. Sometimes I use my phone as an external microphone to hear waiters and waitresses. You also might hear rude comments from the public about your date, someone might try to remove your date from the venue. These are all things that might happen. Do not panic. If you’re with someone who is DeafBlind, simply tap them and alert them that there is something going on. I’ve been trained to educate the public about my service dog, and I can speak for myself, and I can educate for myself. So, just try not to be self-conscience people do stare at me all the time because of the dog, it’s ok.
5: Finding good lighting conditions. This one is the quiet of the Deaf world. If you are trying to communicate with the DeafBlind person using visual American Sign Language lighting is either going to help or hinder your ability to communicate based on how bright it is, and where the person is in relationship to the light. And it’s best to ask the person what lighting is best for them because I cannot answer that for any other DeafBlind person. I can’t even answer that for myself because it’s impossible to explain. So, just ask what lighting is good for them, and go from there, but you need to take lighting into consideration if you are communicating in visual American Sign Language.
Dating someone with a different life experience than you can be an exciting adventure for everyone involved. It’s important for everyone to also remember that you just need to go with the flow. And stay calm when things don’t go according to plan. Most importantly, date someone because they have a sparkling personality that you find attractive, and try not to let the opinions and comments from the general population intimate you away from participating and embarking on a new relationship experience.
That was this week’s if you have a question about being blind or DeafBlind and dating, please leave a comment and I will get back to you. If you have a question about dating someone who is blind or DeafBlind, again, leave a question and I will do my best to get back to you. Please remember to subscribe to my channel, you can follow me on Twitter, and like me on Facebook, and I also have an Instagram so you can find me on Instagram. And if you would like access to videos in advance please become a patron, you can find me on Patreon.com/kitEnglard. Yep! [Thumbs up] All these links are in the description! I will see you later!
Femme de Chem Chats Episode 4: Braille Access Part II, Cost Being a Barrier to Access
Hello, and welcome to Femme de Chem Chats! I’m your host, Kit, with your weekly musings on life, the universe, but mostly on disability. This week, is part II of Braille Access, and I will be looking at cost as a barrier to access.
Braille technology is expensive. Braillers, embossers, displays; these all cost a lot of money—and this is leaving a gap in who is able to access basic braille literacy skills.
Last episode I mentioned that most people who use braille use digital braille, which is a braille file, or .brf extension.
Digital braille is awesome because it allows you to have a lot of things to read, and keep it in a very small space. There’s two problems though: braille displays cost $1500 and up, and also the more cells you have in a display, the more expensive it is.
Displays use piezo-electric technology in order to work. What this means is that underneath each of the cells, under the pins is a tiny crystal and when electricity goes through the crystal, the crystal expands, and pushes the pin up. So, this makes larger displays cost more than smaller displays, so a small 18 cell display will be cheaper than the 40-cell display that I have here. But the longer the display, the better access to information. Imagine trying to edit a resume or report only being able to see 50 characters at a time. That’s what using an 18-cell display is like. The 40 cell gives you twice the amount of information at your fingertips. 80 cells, even more. Basically, longer display = better access to information.
But an 80-cell display is about $4000, so you’re not really going to be getting one of these things unless you really need it. Most of those people are going to be computer programmers, or anyone that works with data information.
Another technology cost barrier is actually an embosser, or a braille printer. Today’s embossers run roughly $3,500, and a student might also need a Perkins brailler which run about $700. So, a school hoping to provide braille access to a student is looking to shell out about $6000 for braille equipment.
When instead they can buy a $700-dollar screen reader, a $369 victor stream, and a $10 pair of headphones, and call it a day.
But access isn’t about what’s easiest for the school district, or state rehabilitation, or anyone else besides the person using the technology. The truth is we’re not offering braille classrooms because school districts don’t want to pay the bill. Which is leaving an entire generation of blind children without access to a good braille education, and it is only feeding the myth that braille is obsolete.
Braille literacy for blind individuals the way ASL is language for language communication for people who are Deaf. It’s how we naturally relate to printed materials, and leads the way to better reading and writing abilities. Luckily, most of the technology that I’ve talked about today, will last a very a long time. My braille display and embosser are ten years old and the only reason I need a new display is because of Bluetooth connectivity, not because the hardware is broken. So, districts can easily purchase this equipment and it will last almost as long as the child’s lifetime in the school district.
Don’t limit yours or your child’s access to braille. Demand from state services that they provide these devices for you for work and for school. Tell your child’s school district that they need to provide your child with these devices. Physical braille provides a chance for kids to learn good braille technique, but braille displays open up literacy in ways that we can’t with only physical braille. We have access to any eBook available on iBook’s or kindle, and can use websites like Bookshare to get books for both school and enjoyment.
Braille is the key to literacy, and it’s not okay that only 8% of blind children will be given access to braille literacy skills.
That was this week’s episode of Femme de Chem Chats. Please remember to subscribe, and follow me on Twitter, and you can also find me on Facebook. Do you want access to these videos in advance? Go to Patreon.com/KitEnglard and become a patron! Links are below, in the description. And I will see you next week!
Femme de Chem Chats Episode 3: Braille Access Part One, The Space Issue
Hello, and welcome to Femme de Chem Chats! I’m Kit, your host, with your weekly musings on life, the universe, but mostly on disability. This week, I am talking about something that has been trending on disabled Twitter. For some reason. And That is, braille access.
So, the majority of braille users in the world actually not rely on physical braille books. They usually use digital braille. And they access that using braille displays, like this. So, I am a little unique, in that I am a heavy consumer of physical braille books. And, when I tell other people who are blind and use braille that I have over 40 braille books and magazines in my house at any given moment, they tend to think that I’m a little eccentric. But, the reason I have all of these books, is actually because I am an orthodox Jew, and for 25 hours every week I can’t access my electronic gizmos in order to read. So, I rely on physical books in order to read on Shabbat and chagim (holidays).
One of the things I have here at home, is a Siddur, which is a Jewish prayer book. I have a braille copy behind me, you can see it above me here [whoop sound]. It is 14 volumes long, although you only see 13 volumes up there right now. The original, the print version, is one volume, and it looks like this.
So, the trending topic on Twitter is access to braille because of cost barriers, but we’re going to talk about the physical space problem. So, braille is wildly impractical to keep around because I take up a ridiculous amount of space. For example, I once took a math class in college, and my textbook for that class was 30 volumes. And, I had to wheel it over from the disability services center on a cart. And I needed to store it in my closet, under my bed, under my desk… It was really quite ridiculous.
So, we have list servers for these types of things because it is exactly that, it is impractical to keep these books around. And for a tiny university like I went to, why would they keep that book on hand? There should be an inter-library loan service for these things, and there is. So, when I needed my book my disability office went onto their little list server, and said “Hey, we’re looking for this book.”
Most of the time these servers are used by universities and high schools across the country to find books for their students. And that is how we get books.
Most sighted people assume that blind people treat their books the same way a sighted person does. You go to the store, you buy a book, you bring it home, and you keep it and love it forever. That’s not how most of us relate to our books. Even me, and I am one of the heaviest consumers of physical braille books that I know, the majority of my reading material comes from the NJ Talking Books Center. Aside from my Jewish texts, which I need for holidays and other things, that’s what I do. I call up the NJ Book Center and I say, “Hey, I want this book.” They mail it to me for free, I read the book, and I mail it back to them for free. For example, this book here, this is volume 3 of 5 of The Fellowship of the Ring. Look at that, 3 of 5, this is huge.
If I kept all of these around, and I had all three of the books from The Lord of the Rings Trilogy, that would be ridiculous. And all the Harry Potter books? Can you imagine? This whole bookshelf would just be Harry Potter and Lord of the Rings.
Unless you are a person who lives in McMansion, you simply can’t store these books in your home or office space beyond the bare necessities that you need. The only exception to this space thing is children.
Parents of blind children, absolutely you need to fill your house to the brim with books! Because children who are blind don’t have access to these books in school, and the same studies show for blind children as for sighted children, that children who are surrounded by books turn into readers! And, children’s books don’t suffer from the same space issue that adult books do. You’re not going to run into The Lord of the Rings problem where there’s 5 volumes, or my siddur problem where there are 14 volumes. That’s not going to be an issue for you. I have A Wrinkle in Time over here, it’s only 2 volumes. I had some Dear America books as a kid, and they were only 1 or 2 volumes.
Seedlings is an amazing resource, please, please use them. They have children’s books with pictures in them for sighted adults to read to their blind children, or sighted children to read with their blind parents. It’s amazing, so amazing, to share in literacy cross generationally. It is beautiful, I love it. I used to use it when I worked in a children’s library. I would bring these books in when I went to read to children. I love them, please support them if you are looking for something to donate to. Great organization, they supplement the cost of books.
That was this week’s episode of Femme de Chem Chats, your weekly musings on life, the universe, but mostly on disability. Next week we will be back to Tuesdays! Until Shavuot. But, next week, look forward to watching an episode on braille: cost being a barrier. So, look forward to that. And I will see you next week!
Femme de Chem Chats Episode 2: Hosting a Person With a Disability
Hello and welcome to Femme de Chem Chats. I’m your host, Kit Englard, with your weekly musings on life, the universe, but mostly on disability. This week I’m going to be talking about hosting a guest with a disability for Shabbat and holidays.
This might be an Orthodox Jewish thing. But we spend a lot of time being guests at other people’s houses for Shabbat and chagim (that is, the jewish sabbath and holidays). At least once or twice a month I am at a friend’s house, who lives one town over from me to spend the Shabbos with her and every week I am either at someone else’s house, or they’re coming to me. Because Shabbat is not meant to spent alone in isolation. And because this week is a holiday for us, and for people celebrating Easter, this Sunday is Easter, I thought this was a good time to cover this topic.
I’d like to start with, please don’t offer to host somebody unless you’re also willing to host their service dog and mobility aid as well. It’s hurtful to get an invitation and I’m told I cannot bring my service dog, because my guide dog is how I get around. And if I can’t get to you, then it’s not a genuine invitation. Either that invitation is being offered out of ignorance that you don’t realize that I actually cannot get to you, or because the person feels like they need to offer that invitation.
In Judaism it is a special mitzvah (a kind of a mixture between a good deed and a commandment) to have people over for holidays. This is especially true for people in the community who are single, or families who are struggling financially, or people with disabilities. But having guests in your home is HARD! This is especially true for people you’re not related to. But I know for myself, and other people in the orthodox community who have disabilities, we are always very appreciative when we do get invited out for holidays. But part of the challenge of being a host is you do not always know what your guests might be able to do. For myself I am not that great in a kitchen, I have trouble seeing and hearing, and people get frustrated when they’re trying to tell me what to do. So, for me, I try to help out by watching children or by helping set the table.
Sometimes the whole hosting-guest process can itself can be a barrier to people with disabilities. Conventional wisdom says, that when you are a guest, bring your host a gift. And this is spouted all over the place, miss manners, etiquette sites… and I’ve heard from hosts that they complain when guests don’t bring adequate gifts.
As someone who grew up living below the poverty line, and continues to live below the poverty line, I find this societal economic barrier to… being a guest, a little bit bizarre. Because the majority of people in the world who are disabled do live below the poverty. And might not be able to buy something for a host. “But kit!” you say, “You can make something!”
I would like to take this moment to remind everybody that DIY projects, actually DO cost money. And so does making food for somebody. Because making food is actually a resource that you are spending on someone else, and some resources cost more than others. Chocolate chips for example, are expensive. Canned pumpkin is expensive, bizarrely—well, more expensive than other things. So, it might actually be possible, that your guest might not be able to afford to make you something right now.
So, as a house guest, what can you do? Well, for myself, I have a stockpile of wine that I have saved up from a simcha (or joyous life event) that actually, ended kind of a little less than joyously. So I have been using that in order to hopefully give joy to other people! Most important though, is just express your gratitude. A simple, “Thank you so much for inviting me! I had a great time, I really hope we can do this again, maybe someday I can have you over.” Something like that.
So when accommodating a guest with a disability, just ask in advance what works best for them! Because when guests and hosts work together, you can really create an event that works for everybody that’s coming. And you can have an amazing holiday for everybody!
That was today’s episode of Femme de Chem Chats! Our next episode will be next Wednesday, for real this time! Everyone who is continuing the celebration of Pesach, Chag Smeach! Please do not forget to count the Omer! And for everybody celebrating Easter, Happy Easter!
Femme de Chem is made possible by generous contributions by our patrons from patreon.com/kitenglard
Femme de Chem Chats Episode 1: Being a Late Deafened Young Adult
Hello! And welcome to Femme de Chem. I’m your host, Kit Englard with your weekly musings on life, the universe, but mostly on disability. This week I’m going to be talking about what it’s like to be a late deafened, young adult. So, I feel like I’m smashed between two groups of people. People who have been deaf or hard of hearing since birth or childhood, and people who have lost their hearing later in life (maybe 40+) and are part of the HLAA, or Hearing Loss Association of America.
I went to an HLAA meeting one time, and I wouldn’t call it a disaster, but they did ask me if I could drive, and I did have my braille display sitting on the table, and under the table was my Seeing Eye Dog. So… Yeah it was disaster. Actually. So, yeah, that was not really my crowd.
But! I’m also not quite in with the crowd who is deaf or hard of hearing from birth. I am familiar with the concept of late in life transitions. I did become legally blind in high school. But, I never had a problem fitting in with the blind from birth crowd because I was always low vision and I did go through high school as a legally blind person. So, I went to college with my first guide dog, I went through college as a legally blind person, I went through the college, uh, just the process. Um, so I have a lot more in common with people.
So, here I am. I am 26 years old. I have fully integrated into the hearing world. I am an orthodox Jew, and I fully participate. I speak multiple languages; my speech is not impaired in any way. And people don’t believe me when I tell them that I’m hard of hearing. They look at me and say, “Oh, you’re too young to be deaf or hard of hearing.” Or someone will come up to me, you know, at a party. Like a boy for example, and be like, “Oh my gosh! Talking to you is like talking to my grandmother!” Yeah. So, I don’t actually like to be compared to 90-year-old women. I don’t know about the ladies in your life. Um, but that’s just me. You know.
So how do I deal with this being stuck in the middle. Well, first of all, I try to educate people. It is rare for somebody who is a late deafened adult to learn sign language. Most people rely heavily on things like hearing aids, cochlear implants, reading lips, and other types of hearing technology. Like remote microphones, like you might hear about the Roger Pen and things like that, that people use at meetings that can connect via Bluetooth to their hearing aids. The rule of thumb for the late deafened crowd is: WHATEVER WORKS FOR YOU.
Because we’re not children, we are adults, and we do have fully structured lives, pre-existing lives, long before our hearing loss, and the older you get the harder it is to transition. Because you become more integrated, um. So, we’re talking about people who really are in various stages of their lives. And ASL might not work for them. Maybe it does! But maybe it doesn’t. But as somebody who is a late deafened adult, I would never go ahead and tell somebody, “Hey, you’re being, you know, you should do this differently.” The only thing I’ll say to people is, “Hey, you can’t bury your head in the sand and pretend it’s not happening.” Because that is unhealthy, and not good for you. You really need to accept the transition and you really do need to move on. And try to incorporate it, and somehow cope with it, in what-ever way you can.
For me, this has meant really learning American Sign Language, going to Deaf events, and that has really been how I have been able to deal with this. Losing my hearing, or finding out that I am slowly losing my hearing, was one of the more devastating things I’ve learned in my life. Um, right next to losing my vision. Because I learned how to use my hearing to get around and all of a sudden it was like, “Nope! You can’t do that for much longer. Um, you need to find a new system.” And the way I’ve been getting control over my life is American Sign Language and getting to know the deaf community, and that has been great for me.
So, if you know somebody who is a late deafened adult, or who is losing their hearing, it is totally OK to ask them if they are interested in learning American Sign Language, and that you are absolutely willing to take a class with them. That is totally OK. But, and I’ll tell this to anybody who knows somebody who is losing a sense, it’s a journey. And, it is a journey that you need to let the individual take the lead on. Because, I’m going to get very Jedi Knight here, you need to choose your own path. Nobody can tell someone else that they need to learn braille, or that they need to learn American Sign Language. It’s an individual choice, and you need to choose your own path. And, that’s ok, and that’s important.
So, make sure that no one else is pushing you into doing something that you’re not ready for or you’re not comfortable with. That is my sagely wisdom for this Tuesday. Femme de Chem Chats are weekly musings with your host Kit Englard about life, the universe, but mostly on disability.
So, we will be posting these videos every Tuesday. Except the next two Tuesdays. Because, it is Pesach, or Passover. And the next two Tuesdays are Passover. So, for those of you who don’t know Passover is eight days long. First two days and last two days are holidays, or chagim. And, um, we do not use electricity, or do work, or other things. I will post a little link in the description, so you can check out that. Anyway, so instead of it being on Tuesday the videos will hopefully be uploaded on Wednesday. Definitely next Wednesday, the Wednesday after, I will try. But I will actually be on a train. A nine-hour train ride. So, it will either be late Wednesday, or it will be stupidly early on Wednesday at like 4 in the morning. One of those two. Unless I can figure out how to post it… Anyway! That’s not really the point! So, anyone who is celebrating, Chag smeach! Please do not forget to subscribe, or check us out on Facebook @Femmedechem, check out on Twitter @Femmedechem, check us out on our blog, femmedechem.com. Femme is F E M M E as in the French word, everything else is basically what you’d expect. D E chem as in chemistry. Alright, so that was Femme de Chem Chats and I will see you next week! And Chag Smeach! Femme de Chem Chats are made possible by our patreon.com/kitenglard donations.
Femme de Chem Intro Video Transcript
Hello, and welcome to Femme de Chem. I am excited to tell you that the blog will be going live starting April 3rd. We’re going to have geek related content. So, what does that mean? Femme de Chem will be a place to find geek culture, science, and disability news. Right now, it is hard to find geek news for people with disabilities. I am hoping that Femme de Chem will be a place that is 100% accessible to all geeks. Because being a geek doesn’t mean being sighted, or hearing, or being able to walk, or even being healthy. Anyone can (and should) be a geek. Femme de Chem will have accessible content by having videos with either American Sign Language or subtitles for deaf, voice for blind, and transcriptions for DeafBlind. All pictures and visual content will have an image description added to it. The website will compatible with screen readers and braille displays, so please. Browse around the Facebook page and show all of your geek friends. Like, share, and enjoy Femme de Chem.