Decisions, decisions, decisions …

Dear readers,

I had made a tough decision before, to remove KO from my life before I met other people who would shape things in the future. I want to tell you all that another decision was made too recently that encapsulates what I’m talking about with regards to universally keeping friends. I’m very sorry to report that friendships can’t always last, and when I got with Trenton years ago, I lost a total of maybe a few friends, six in all. There was a Bethany, Elizabeth, Elise, Nathan, Chris, and another Bethany. These six individuals, last names left out, know who they are and I can’t support the faith they chose. Only one person, a very wise woman named Carolyn, is still sitting on Facebook but I have yet to grab her phone number and invite her to the commitment ceremony in May. She’s local, so I am very happy about that. But let’s face it, maybe I didn’t lose Elise so much, but the five others yes. This church had hugely rigid boundaries and some power structure issues not friendly to women, but their leaders were okay. For the most part, however, the leaders concluded that my relationship with Trenton up to this point would not last. The girl we both decided to block, and hence not name, does not understand I want a lasting relationship with someone who will put me number one in his life, regardless of the degrading comments of others, and those comments are not just the ones about my talents, but they are the ones about my revolving my life around them, or the world does not revolve around you and that sort of thing. Who else do I have to educate or cut off?

Thankfully, we have friends out of state who support us. However, most if not all of our out of state friends are poor, don’t work, and may not make it to the wedding. Commitment ceremony is two words, but the word wedding kind of encompasses what I’m talking about. Yes, Trenton and I may only have SSI and such, but we can’t have a paper for the certificate and all that. We just want a relationship that lasts, and lasts and lasts and lasts without interference. This means the trolls better stay out, and any person who might be caught flirting with the possibility of doing something to conflict with commitment plans is going to find themselves wondering where they are faster than their heads spin. I don’t care if I have to have a police presence at my own commitment ceremony so that swatting doesn’t happen. Swatting pranks have happened because of people making up stupid jokes about others, and we simply want to avoid the problem altogether. I also want to make a formal announcement. If you believe that Jesus is the only God permissible to worship, skip on and close the page immediately, but if you are interested in my real self, my beliefs, and supporting me, read on.

I have been battling with myself, literally in a debate with the brains and such, about my spiritual journey. Our commitment ceremony will take place in May, but I need to do some serious studying. I know some of you might think paganism is the worship of Satan, but that alone is not true at all. Satan, the Devil, etc., hurts people and does not want relationships to last. I am indeed thinking about converting to Wicca, and I will not be with a coven group as it is just too damn much of a burden for the group. I would have to take on too many responsibilities for things unseen and things that are costly. I’m considering a solitary practice, solo practitioners are oftentimes a bit more flexible that way. Let me try and debunk some of the myths and facts about Wicca that I’ve been learning so far, and before I do, it’s been a tough decision to write this post. I know that some of you might be like, why? You were Muslim, you were Christian, you wanted to try Judaism. But face this fact, I can’t believe in a patriarchal order of only one God commanding people, especially women, to have only lawfully married sex and to command people, especially women, to dress a certain way. I’ve been slut shamed, called nasty things, and many other things, and I won’t allow this to affect my decision. Now, to the myths and facts about Wicca.

 

  1. Myth: Witches worship Satan. Fact: the God in Wicca has horns on his head, so when Christians wanted to oppose the worship of many gods and or goddesses, they must have, and definitely copied the look of the Goddess’s horned mate, the Lord. This God’s horns have been notable in the drawings and sketches of Satan, but that does not mean Satan is what a witch worships. many Wiccans worship goddesses and gods, but nobody says, “Praise Satan” as in the Chilling Adventures of Sabrina. Witches have to follow a read, and the read is simply: harm none, but do what you will. The key emphasis is below.
  2. Myth: Witches cause trouble and hurt people, cause demons to go into the house. Fact: The key emphasis on Wicca and witchcraft is very simple, but very powerful. The first two words I wrote of the Wiccan read are as follows: Harm None! I do not intend to harm people in my craft, only observe a spiritual connection to the Goddess and the three stages of womanhood, something Christians forbid. Maiden is my stage of life right now, and when I give birth, or even adopt, I will become Mother, and when I reach the stage of life where my body fails to move, I will be an old crone. No offense to old people, but crone is the final stage where a woman passes through life.
  3. Myth: Witches turn people into animals and vise versa. Fact: Most magical movies, Harry Potter included, use a combination of external magical tools and innate born powers to perform the magical tricks that the faculty at Hogwarts teach. But let’s face this: HP and Hogwarts don’t amount to what I’m talking about. Spell casting and witchcraft in a modern sense of things is actually a lot harder, but the magic is all within you. Every ounce of magic is within you, and unlike the distinction between Muggles and Witches/Wizards in Harry Potter and other magical themes of literature, we are all born with some form of magic within us. We all have a connection with nature, even in a sprawling city. And that means, oh yes, all it really takes is energy and concentration and a bit of belief that what you’re trying to accomplish is real. And unlike the Harry Potter or other kinds of magic spells in other literary phenomena, Wicca spells don’t have to be in Latin, Gaelic, or whatever. For example, in Harry Potter and the Sorcerer’s Stone, remember the Levitation charm? The way Harry and Hermione made objects fly makes it look like kid stuff compared to what you really do have to do in a magic spell, and it is altogether impossible for objects to be made to fly on command, of course. The two word incantation is wingardium leviosa, which gets its origin from the Latin word to “levitate.” OF course, to truly cast spells, you have to know a lot of things. Sure, Hogwarts herbology is a bit inaccurate, but in order to do magic, a reason and purpose for me is paramount. I for instance want to commune with Goddess, so how do I do this? I basically put on or don’t put on robes or clothing, and then you light some candles, and then, depending on the size of a coven group, you have to make sure everybody is in the circle. Using an atheme, a small swordlike device that opens and closes a circle, you would ceremonially open and close circles, and exert energy onto an altar. That sort of thing. I need to do more research on which craft I want to fully get into.
  4. Witches according to myth are evil, and get their kids involved. Fact: I wouldn’t want my kids to know too much about witches and witchcraft until they are old enough to understand the myths and wrongheaded viewpoints. My kids will not be allowed to dedicate themselves until they are either at least eighteen or can hide their identities from prying Christian eyes.

I’m thinking about meditating in this sense with wand and stones, and yes, I want to make sure that everybody knows, I am not interested in lighting and burning candles except the scented kind. I could get scented candles, just plain ones, in three different floral kinds. But really, guys, a solitary pagan practitioner is what I’m leaning towards, and here are the reasons why:

  1. No need to worry about going to a building. Hell, you can practice in the park.
  2. Hell, no need to worry about boring preachy messages about God or patriarchy and all that.
  3. People won’t make me lawfully wed someone I dislike or can’t trust.
  4. Judgmentality on the basis of who and what I love or am is a no no in Wicca. So I have a lot of lesbian friends who are Wiccan, and Wicca emphasizes no harming others, so LGBTQI+ people are able to enjoy their lives and be themselves, and all I want in chorus things is to see my friends happy like they should be.
  5. I’m not going to brag or not brag, but I find Wiccans more supportive.
  6. The solitary practice appeals because there’s not as much to do, and not as many things to worry much about.

Thank you all so much for reading this blog. And may I add, churches have demonstrated again and again and again that disabled people are simply unwelcome if there’s no money coming to their offering plate? That’s the impression I get from GCC. I’m sorry, people, but a lot of churches are like this. There are small ones, but the small churches really don’t have enough resources to help a blind couple navigate SSI and medicaid and all this stuff. With Wicca, I don’t have to worry about this. No building in an unknown address, no hobnobbing judgmental people trying to mess up my life, no “You had sex outside marriage? Oh okay, you’re out.” No, I won’t tolerate this.

Please, if you are someone who wants to tell me this is wrong to do, don’t. If you support me, I’d like words of encouragement. And I need ideas on where to hold my commitment ceremony/wedding. Thanks.

Respectfully,

Beth Taurasi

Disabled People Must Dare to Love, Dream, and Thrive

Dear readers,

We had to scrap all plans to attend any birthday celebration in California. This is the biggest reason: SSI and not enough money between myself and Trenton and the bills and the apartment needing maintaining because of its status. Sorry, and even more so, I’m angry. Continuing the rant I had earlier on Dabel, well, for those of you who didn’t see it, I’m concerned about a few things: one, a welfare check at the apartment because the cops might get interested when a former friend of ours calls the DPD on us simply because we won’t talk to her; two, we will never have enough money and given the traumatic circumstances of the guardianship in my life, we will never be paid back. I want full payout from my family, restricting them to a fixed income like I have, not allowing them to go on exotic or domestic trips. We can’t take any form of a vacation because of SSI and its limits, and if Trenton and I are lawfully wed, there goes any possibility of a life within a family, and the family will likely not play together. So we could play board games, but they’re visual half the time, and for us blind folks, we have to buy special adapted board games from a company that sells such things. My kids will be embarrassed to learn that “Mommy and Daddy don’t want to take us to Disney World to meet Mickey Mouse because they are poor, can’t afford it, etc.” How am I going to be able to enchant my children with a museum visit without thinking, then what do we do for food? Then what do we do to get the mortgage paid off? And the electricity? Water trash and sewer? We always have to keep this shit in the back of our minds because we’re blind, because we cannot do jobs and job skills training is a big joke in the United States. For those of you in the National Federation of the Blind or the American Council of the Blind, please note that what I went through, I described in prior posts. I could’ve been called a raghead by the same stupid doctor who flaunted his ignorance of Islam. The same doc accused me of pretending to be Arab. This will stop, and the use of racist material to test a blind person should have been stopped before it got started. Now, his words impact where I go, what I do, and how I live my life. Because of Benson, I can’t get a regular job with benefits, that has paid parental leave, that has vacation time, that has a big fat check associated with it, good insurance, all that. My kids should get all their shots, and when they are newly born, there’s still going to be complications. Those little babies if they arrive at all will require immunizations, come Hell or high water. They will learn, regardless of what school they go to. The kids will have a good time with their parents and family, us. And that means Disney World, Universal Studios theme parks, or even Elitch’s. But we can’t even think about that. The first things we have to keep in mind are food, and for the sighted ones, the working poor, they have car payments. One woman in Detroit went on Oprah Winfrey’s show to talk about how she had to make a choice: buy food for her children and risk losing the transport to work, starve the kids and keep the car. This is not the America I want to live in. I want a country that will make it possible for me to enchant my kids with real vacations, in hotels with food and water, and with friends and relatives that care about us. And the best thing about vacations is memories. My kids need freaking memories. Taking pictures, as the old song goes, is making memories. LEt me add another line from the song: catching little pieces of time; making them yours, and making them mine. I could keep going with this song, but think of this. My aunt Donna took me and herself to a dolphin reserve, and we got to play at the now defunct Marineland on my sixteenth birthday. I got to learn how to make a dolphin bow. And I don’t remember the day Coach Bainbridge taught us American history of the bank, but I do remember most of what I learn in history because I love history. But the dolphin park memories stuck with me, and guess what? We have pics of this experience, but yet I have or had a shirt with the trainer stuff on it. I was an honorary dolphin trainer, and that was cool stuff, wasn’t it? This is just one big example of memories I will never make with my children, especially if we can’t make money. We’re not made of dollar bills, and SSI will likely be audited. I really want my kids never to have to grow up in a shabby run down building with bad furnishings, slapped by someone worse than the friend we both blocked, or worse, thrown into foster care because of mine and Trenton’s relationship or blindness. What we want, ultimately, is to enchant the kids with trips to the opera, the movie theater, concerts, ball games, and many other memories they will be able to take home with them to the next life and beyond. Our friends in California understand our frustration, but how many times will we ever explain to their kids even? How is it that these people, both lawfully wed, both blind, etc., will ever say, “Kiddos, we can’t afford theme park excursions. We will never be able to meet this character or do this thing because I have to pay the dog’s or the cat’s vet bills, or we have to pay the house bills.” And worse, how is this couple going to afford a job? Yes, the woman is going to college, but then what? After college, who is going to hire her? Who is going to hire me? Neither of us can either find a job or find a way to live. Teacher’s salaries are hard to live on anyway, and the woman’s husband needs some form of support while she’s gone, and the supports workers have been extremely good and helpful to these folks. But for me, and my soon to be committed partner, what the hell is going to get us out of this rut? I feel ashamed of the country I live in, more interested in the barring of Muslims to Israel than the welfare of a disabled couple who might never see friends, Disney World, or national parks. We will be in a country surrounded by gun violence, a country more interested in how to make a profit than how to show compassion. I am so ashamed of this awful place, where the president we elected likes to make fun of and mock protesters, persons with disabilities, and so many more thoughtless acts. This country could end up becoming Gilead, where the Handmaid’s Tale is set, and I will make this clear: I stand for a flag that represents my personal freedom. I want the freedom to choose whether I will live in a house or a nice apartment with cats. I want to choose to get married without punishment. I want to choose the best answer wthout the best answer leading to a two hundred dollar penalty. So for example, do I get married? The answers: A. yes, B. no. The answer should be A., but the A. answer will cost me and my committed partner a $200 siphoning and more financial hardship. The B answer is a sinful answer that could get me kicked out of church after church and the kids unable to inherit things. So let us try a different question.

What do you do to earn money? And keep care services in place if you need them suddenly? A. get a job. B. Collect government benefits. C. Move in with family. The answer choices are not right or wrong, but let me explain why B. is my answer. A. would lose me the care services, a chance to live full and productive, and for those with wheelchair use or chronic pain, B. is the answer because A. would lose them their medicaid, and C. would mean abuse and too many rules, no chance to attract and keep friends and a mate. But what happens when we choose B.? We get punished, family cutting you off, family begging you to “get a life”, friends walking away and not understanding why. So no matter what answer or logical conclusion you come to, you get a punishment in financial or support things or you have to lose out on enchanting your partner, yourself, and your children. If you do the next question, be careful. Here is the next multiple choice logic question.

IF I am a person with a disability, do I A. go to church/place of worship. B. stay home. or C. Convert to a religion that accepts me for me. Again, no matter what answer you choose, you get punished in some strange way. If A., go to church, you lose out on friends for having sex outside the marriage. IF you chose B. in the prior question, the church will kick you out for not putting money on the offering plate, and then there’s the issue of LGBTQ+ kids. If your child came out to you as gay or queer or something, you would have a choice. See next question below. If you stay home and do things as a family together, and forget the place of worship, you take all the problems under choice A away, but then you get another problem. The kids need a place to socialize, to meet up with other kids with parents in the same boat, other things. And as for you and the partner, staying home means a rusty cane skills set and no social interaction and a chance to meet new people. Enter Soar Youth and Adult Choir, Denver Women’s Corus. Those kinds of activities are great, but Trenton doesn’t sing, so what activity should we do in place of worshipping at a building that doesn’t get it every Sunday? Choice C. might just be the answer, but with a catch. If I said I’m a pagan to any person in my family, they’d automatically assume a few things: that I worship Satan, that I am a wicked person, and that I commit sins and am an apostate. So really, this is a question that no matter what choices I make under this question, I have to suffer or we have to suffer.

The next question is a hard one. What alternative activities do you choose in place of worshipping in church? A. going out to eat. B. Going to the park. or C. Sleeping in. This is something I could add an all of the above to, but if I chose option C. in the last question, going to different sorts of places would work, but remember, money is an issue.

If you’d like to help me get somewhere with the honeymoon costs, please visit http://donate.denverqueen.com, and I will reinitiate the campaign to get the donations. Otherwise, contact me.

Beth

Letter to the People Who Think I Shouldn’t Be In a Relationship At All

This post does not begin with a greeting to all readers. But we must discuss a few things that need to be cleared up. For one, when I was in a relationship with someone else, and every single time I was in a relationship after, people have been going after me for various reasons, including but not limited to “slut” behavior which is a surefire way to say that I was slut shamed, called names, called worse names than a dog, and so on. I was labeled as having hung out with the wrong crowd, especially with Deq. That was ultimately the worst thing the NFBCO could have done. Let me clear some things up:

  1. Upon my arrival at CCB in 2010, I was at this point sick and dog tired of relationship drama, sick and dog tired of people throwing me away like garbage, and sick and dog tired of people making up stories about me and having to call me every goddamn time it happens that someone says something about someone else. I’m not the rumor mill of the blindness community, but that mill will lose its mortar and pestle very fast very soon.
  2. I chose Deq because he was not just the ordinary blind European American who spoke trashy comments or made assumptions about this country’s greatness, but I also chose Deq because in my mind, he was a rebel. Of course, I still think of Deq as what it means to be an American immigrant in the modern age. He came here from Kenya, but originally born in Somalia, and then he has done interpretation work for his immigrant Somali peoples. Deq is making money, is a U.S. citizen, and has a refugee wife. He’s doing great.
  3. Let’s face it. I had a relationship with Deq, but why do you European Americans have to think I hung out with the wrong crowd? When I think of the wrong crowd, I think of Terrorists, drug dealers, and criminal syndicates. Deq was none of these. Though he had a few beliefs that clashed with mine, we still enjoyed each other’s company, and I put up with it till I knew we couldn’t anymore. It was my choice to break it off with Deq Ahmed, but it was best for both of us. His clan and family would never support him marrying outside the bloodlines of Somali clan life. I made a regretful decision to date the next guy I dated because it was I who was foolish to see what kind of fool he was. He ended up abusing my trust and violating sacred human decency when he recorded the intimate moments we had, said I wasn’t good at sex (as if this wasn’t bad enough, and as if I was good at prostitution at all.), and he violated God’s and the universe’s central tenet of love and compassion. He has no capacity for empathy and I’ve seen it in him. He used his fake empathy antenna to lure victims, and it’s kind of sad.
  4. I dated a friend who chose a heartbreaker over me. And he learned his lesson, but I will not go back to him. Blake is a nice guy enough, but he needs a Conservative Christian woman with a liberal spice and a bit of neutral marinade. However, Blake’s family pervades his every day and hour, and many young women would not date a disabled man for some reasons that include the inability to move out of mother’s nest, the inability to take care of baby daughter, and the inability to see the daughter’s face. Girls who are ableist are everywhere, and many women of the age of mother tell their daughters not to actively date blind men. There’s a special word for that, and it’s a class related word but it puts the whole situation in perspective and I heard it from a MGTOW video and I can’t remember the word. I need to look back at that video and tell you what that word is. Oh, yes, if I did look at the video, hypergamy is everywhere. Blind hypergamist ladies are everywhere, and I learned that the hard way.
  5. After the breakup I was contacted by my previous ex, see Item 3, and I couldn’t remember why. It might have been that his long dead girlfriend had been just declared dead, and he was begging for forgiveness for himself from me, but of course, he refused to own up to what he did to me and Jennifer. Let’s just say I’ve kept a world free of him for four years, and I won’t go back. But then came Joey. And the world seemed like a brighter place, but then I learned later that people gave Joey the short end when it came to me and my personality or persona online and off line. I don’t know where people are getting these bad assumptions and misconceptions from, but this community of blind people are clearly incoherent. I’m not saying drunk, but not able to stick together and do the things necessary to stop discrimination and ableist rhetoric from spreading. So when I dated Joey, I was treated as garbage would be treated in a landfill, and only to have this guy break it off with me three weeks later. A letter from Grace Community Church was illicitly sent to Mr. Joey because the church did not believe in women’s ability to stand on their own two feet, apparently. How do you remove apparent filth, you might ask? By not sending a letter to my ex, of course. The church has defended sex abusers in other locations, as I later found out, and worse, they kicked me off the membership list through the vehicle of Joey nonetheless. This church should be ashamed of itself, and Christ would burn that whole building down, and take its people with it because he was and is an inclusive personality, and he loved everybody. He did not come for the righteous bastards who sexually abuse kids, but he came to call sinners, only the worst sinners amidst the crowd. He will pray with the people who can’t live as their assigned genital sex at birth. He will call the pansexuals, gay people, and the disabled. And Jesus will never tell people they can’t marry the person they love, and any reason to convert LGBTQI+ people to straight pale eyed lunatics will be void. Jesus loves us, if you know what you’re saying, the way we are and ought to be. Jesus did not look at blacks and whites but people. And Joey’s intolerance and family structure proves otherwise. Straight, white, and Christian families no longer appeal because they are bigoted toward transgender individuals, even in a love setting.
  6. Recently, friends have walked away because I am dating Trenton. I am serious though, want to commit to Trenton. In any case, I’ve lost too many friends from GCC and as for Trenton, there are people who say he shouldn’t be with me. Let me make one thing clear: he’s a good and supportive man, and I don’t want friends dictating who he’s with, let alone family. The grandmother saved the family and in spite of 92 years of age, she’s done a lot for all of us. The big thing is that the friends who dictate who Trenton is to be with can’t in any situation tell him or I that I am a crazy bitch who needs weekly or twice weekly therapy instead of twice monthly. I do indeed want Trenton to have friends, but. friends don’t do several things: friends don’t like when friends drive drunk; and furthermore, friends are supposed to accept and support decisions that they might not agree with. While the friends I speak of did not agree with Trenton’s decision to commit to me, I’m sorry to say this, but these people should have been more supportive and been friends only with both of us because acquaintance status won’t cut it. It is highly offensive when someone talks about a girl’s sexual behavior at a wedding, at a party, with friends, and even more, uses any excuse they can to commit something that could have left me bloody on the floor. I won’t go for this.

Now that the air is clear, I want to make another thing clear. The commitment ceremony will be on a day in May, 2020. We are also going to have to delay things because we’re going to California to celebrate a birthday with a longtime friend of Trenton’s, possibly. We don’t know, we have to book train tickets when we have the money for it all, and then we have to worry about food and incidentals and such.

Thank you for your supports, guys, and thanks to Global Books for liking this blog post prior to this one. I am now following you.

Beth

A Love Letter to Imagination

Dear readers,

While thinking long and hard about how much less imaginative we’ve become to a point as a human race, I think of what might have caused it all. For one, Barney, the purple dino we seem to love at one side and hate on the other, taught us all about imaginations, using your imagination to pretend you’re in a castle or in a deserted island where buried treasure awaits and pirates attack you from all corners. I honestly think that we’ve run low on imagination a lot. And I honestly think the imagining I’ve done lately has to do with helping us solve world problems more than just plain nice things. I mean, as the Dreamfinder at Epcot used to say, “One little spark of imagination is at the heart of new creation.” No kidding. And we’ve lost all that because of a few things: video games with three dimensional graphics. Yeah, I’m not trying to blame all video games but the ones that immerse you in too much virtual reality could rot your senses dead if you do it too much. What we need to be doing more of is pretending with more affordable assets, and let me give you an example.

IF you want to travel to the world of Middle Earth in LOTR, you have a few options: one, you can let a video game designer boost you into a virtual Middle Earth, or you could read the books, or you could pick a place, such as the hobbit hole where Bilbo Baggins lived for a long while, then he left it to Frodo. You could create your own sign on your front lawn that says, “no admittance except on party business. Bilbo.” You could also welcome guests, like this: welcome to the hobbit hole. Then hold the doors open, and what do you know! Walk inside your empty home, and imagine what you could store there. OF course, a teakettle or teapot in the kitchen, paint the walls a light elven green, and then add a red coloring or two … whatever floated around your mind when you wanted to pretend your house was a Middle Earth sanctuary. Let’s imagine something else. You’re throwing a party for a friend, and they love Harry Potter. You can’t afford to take them on a flight to Hollywood and or Orlando to see the theme parks, but you could so dress up your kitchen so it has the following things in the middle: a Hogwarts coat of arms, everybody wears dress clothes or dress robes, everybody stirs their drinks with a plastic soda straw in place of a wooden wand per se, but then … not sure where to go from there? You could always pluck a twig from a tree, and pretend it’s a piece of holly or something from Harry’s wand. Imagine you’re a wizard using one o those fancy schmancy remotes that looks like a wizarding wand from that world. Muggles, beware of the imaginations of the wizard fans. Muggles who are boring enough would ruin the thing, so yeah just don’t invite too many of those peoples.

What we lack in imagination, few are better at improving what we already have. It’s weird. But that’s what world we’re stuck with today.

So how can we get that imaginative mindset back? Well, think of your childhood. Santa will aways be around if you need a little Christmas magic. And if you can’t see snow, pretend the white paper on your boots is snow. LEt your imagination run wild, and let the dreaming begin.

Beth

Road Map for Aging Seniors and Adults with Disabilities

Dear readers,

As promised in the previous post, here is a road map of sorts for seniors and aged adults. IF you are the child of a senior, this is important.

Be sure never to use for profit probate guardianship for their well being, as this is a disaster waiting to happen. There are many loving people who can do this job, but then there are the bad actors out there. FAmily guardianship for adults with disabilities or seniors is a disaster as well, given the nature of what the adult really should be doing. Here is a replacement model I can come up with for the guardian program in Florida and other states still clinging to that warped belief that disabled and senior adults need guardians.

IF you have a Down’s Syndrome or developmentally disabled adult in the home, it is so easy to fall into the guardianship and group home trap. But there is a way out. Jenny Hatch’s case demonstrates the need for autonomy and the right to make choices as a disabled adult. Jenny was forcibly put in a group home, denied contact with friends, and denied a chance to go to church. Now, after the guardianship was removed, Jenny is now living with friends, holds her job at the thrift store, and goes to church on Sunday and can do whatever she wants. This is the life all of us, blind or Down’s or whatever, we should all strive to live the lives that we want, not what a guardian says we need. So the model for Jenny’s case is supportive decision making, and there is a catch. Someone would oversee each aspect of a person’s life, and for seniors, be sure you have more than one supports person in your will or advanced directive so that you don’t get mugged, robbed, or otherwise exploited by a child or grandchild who may resent you. Better yet, find people who can be supports to you who are younger and able to do this job. It is a big responsibility to be a guardian, but supportive decision making can help seniors and developmentally disabled adults make the decisions they need to go forth in their lives. LEt’s take my father for example.

If my dad develops Alzheimer’s Disease or dementia, the last thing his sons and their spouses should ever say is “Oh, he’s going to be a burden on us. Let’s institutionalize him.” What better option is out there? Keeping Dad in his own home, with his wife and children, grandchildren and so on. Another better way to handle the memory problems would be to specify different supports coordinators for differing needs. For instance, my brother Danny and his wife could coordinate social services and in home memory care and drilling to keep Dad’s brain sharp for as long as possible. He should be fitted with an ankle monitor not for probation or because he did something wrong, but for the safety of Dad and his family, so that he doesn’t wander off. Nursing homes don’t often do care the way family does care, and putting him in such a place would render his care assembly line like, not good, and the nurses could fall into the abuse trap. So here’s what happens: the brothers and their families will have to coordinate ways to keep Mom and Dad in their home, set the home up with alarms and other things to keep one or both from wandering if they fall to Alzheimer’s or dementia, and support care will need to be sought in the hometown from which they came. In Denver, I get excellent supports care coordination in my home, a home aid of course, but that was recommended by a mental health professional. I personally have been through too much, so mental health therapy should be used to cope with this traumatic existence. If Dad and Mom need help, I sadly can’t give it because they refused to accept my adulthood. Danny and Tommy, the brothers in this case, and their spouses, children, and grandkids will all have to be involved in making life altering decisions for Dad, including realizing that nursing home abuse is alive and well in Florida. Should a nursing home be used? Not in all cases, but nursing home lie isn’t good for anyone who wants to avoid being forgotten and abused. Mom and Dad should recognize they will need to have a say in where they live when they turn 90. Should they need assisted living, that might b a better option, but only if they say yes. IF Danny and his wife want to help with caring for the father and mother in laws or whatever, they must be loving and committed to doing their job well. The wife will have to be able to get to know her in laws from a clinical perspective, and I found out she’s a psychologist. Though she does work with young people, I think she will have a good sense of what is to be done if her father in law has dementia or any other memory diseases.

When a senior adult or disabled adult dies, make sure the family or somebody claims the body. I’ve written extensively about my friend Kaitlyn Reichert, who died in California without a proper funeral and nobody claimed her body. I was just getting things mended with her, all this when suddenly she died. I found out the situation behind her death, and the big reasons why she was unclaimed may be the fact that she is disabled or was so severely disabled she needed some care. Humanity cannot handle that much responsibility at once for 100 cases, as we know from seeing the for profit guardians and their cremated wards in their office buildings instead of in a proper urn. Rebecca was a guardian in Orlando whose story has appeared at length in the Orlando Sentinel, but what she did was unforgivable. Certifying a DNR should be up to the patient, not a guardian, and Rebecca had lots of DNR’s thrown at seniors she didn’t want. Is this the new normal? If my dad gets terminal, or my mom has broken brittle bones, or my grandmother or my mother’s dad no less needs to be hospitalized, a for profit guardian should never be in charge. Papa Rod Hebert may have stage I dementia, but he should still have a say in his DNR status. If he wants to keep going and going like the energizer bunny, he can and should be allowed this choice. IF my mom doesn’t want a wheelchair, but instead wants to go with a support cane, fine. But when the time comes, both my parents and their parents and other family members should be given the element of choice. Danny may be a married man, but he will have to keep his father from being thrown out and forgotten, and a for profit guardian will lead to certain doom for the whole estate. Tommy will have to one day make a huge decision about both my parents, along with his brother, and it cannot involvve a for profit or public probate guardian in the state of Florida. Look at the results that Dr. Sam J. Sugar popped out with, and if you want more info about why probate guardianships don’t work, go to http://www.aaapg.net, and have at it.

Beth

Fifteen years later …

Dear readers,

What would you do in the following scenario: your parents got guardianship behind your back and told you never to fight or speak out against it? That it was all about protecting you? And then you found out the real reason for this. Well, I’m at a loss. It was fifteen years ago this fall that this was even considered a thing. For one, I can’t easily get hired for a job, and behavioral assessments have proven not a good or effective way to determine whether I as a blind woman need a guardian. Let’s face it though. I have a few things I want to do with my life, but people think a job is a requirement in life, but when you’ve been carved out like a piece of chicken, used as a bad example to others, and then your friends were turned against you, you pretty much have nothing to lean on, no references that speak highly of you, etc.

As a blind person, I could have found a meaningful career if not for this fifteen year song and dance tomfoolery that I call what my family deems as protection, but this was playing games with my freedom and rights as an adult with a disability. Let me warn all parents with disabled kids, whether your child is nonverbal or otherwise, recognize that they have a brain, they have rights, and that they could do something meaningful whether you like it as a parent or not. As I told the Parker Daniels show, what do you want your child to do in twenty years? I’ve spent fifteen of those years playing catch up with relationships, having to explore things that I couldn’t under my parents’ oppression. And yes, before you start touting “But we protected you” bullshit, think again. Protection is overboard and overbearing when it involves removing rights, especially those of association with the people the subject chooses and the rights to marry and own property and have financial freedom. Because of my father’s name on my bank account, I can’t own a home, apply for a home loan, etc. So I’m considering my options. I’m trying to think of ways to get Trenton and I better housing that doesn’t require rental style rules, rules about guests, rules about pets, or rules about screaming whining kids. I’m sorry, I want kids before the pregnancies become risky, and risky pregnancies are no fun. My friends who have been pregnant know the big thing about pregnancy is that every one of those things is different. Of course, I’ve had friends miscarry, even if they don’t smoke or drink or do drugs. However, miscarriages are painful and trying is important. If I miscarry too many times, I’ll have to consider adoption but that costs money and time. If I were to adopt, it would most likely be girls with disability or other forms of differences, including autism. Parents with those Autism Speaks stickers on their cars may soon find that it is harmful to keep those around, and I’d encourage parents to look deeper into an org’s philosophy before joining or adopting this. I will never also use bleach to “cure” anything, including autism because the difference has no so called cure, and autistics can’t or will never submit to being fixed. I’m sorry, but they also can’t be given second class status with guardians hovering over their rights, including that of intimacy and healthy relationships they desire. There are two autistics who married in an all autistic wedding, and they went to a support group that showed them ways they can engage in healthy intimate activities. So there you have it.

Here is, for lack of a better way to say this, a road map, not an instruction manual, for a disabled person who is born this way.

  1. Keep the baby. If the baby is disabled, and you can’t handle it, then you have a week to drop the baby off at a hospital or fire station or whatever. I don’t know how the so called “baby drop” thing works, but it’s within a month or a week in some places, and if you can’t handle a child’s disability, you are responsible for abiding by the laws with regards to safely placing your child with a family that can handle the child and give it the loving care it needs to grow and develop.
  2. If you choose to follow the instructions on keeping your baby, then great. Welcome to parenting, but beware. You will need to research, research, and research like crazy any philosophical things and orgs you can join that help you understand and accept your child’s disability. For example, for blind children, go to http://www.nfb.org, or you could also go to http://www.acb.org, or http://www.afb.org. There is a lot of pertinent info on these sites, so check those out. If you have a Down’s syndrome baby you chose to keep, pick up Jason Kingsley and Mitchell Levitz’s book Count Us In, Growing Up with Down’s syndrome. You never know, you could run into a Down’s syndrome support group. If you are purposely looking to adopt a DS child, try Rees’s Rainbow Down syndrome adoption ministries. I don’t know if they’ll allow LGBTQ+ individuals to adopt, but there are lots of domestic avenues you can try if that one doesn’t work. This one jumps out at me though as they adopt waiting children out with Down’s, and these special people are waiting for good loving families, and let me give an example. I believe Barbara and Jack Levitz are Jewish, and they gave their son a bar mitzvah, so did many other families I’m sure.
  3. Recognize the risks. While you are the parent of a child with a disability, keep your brothers and sisters a safe distance away from your disabled child. They could become the first target for a preying relative, and as demonstrated in some case studies in the Protecting Your Children from Sexual Predators book, they don’t have to be male. If Uncle Pete is caught messing around with your disabled kid, kindly walk between them and tell the guy to back off. And yes, when the child is old enough, boundary setting is so important. Disabled kids are at higher risk of being sexually exploited, so having boundaries for these kids is highly important and vital to you and your child’s relationship and the child’s survival into adulthood.
  4. Recognize the child’s right to exist. Never use threats to kill or harm your child as punishment or during discipline. This hurts and downright degrades the kid. I speak from experience with a mother who thinks she can get away with this kind of thing, and then she verbally abused me as a teenager. Of course, because of threats at a young age, I learned quick that I couldn’t trust either parent. Neither could I trust my brothers and family and then, there went the support system.
  5. Recognize the child’s adulthood without fuss. When your child turns eighteen, that’s it. No natural guardian or plenary guardian can really do much. If your highly functioning child with a disability wants to move on with his or their life, let them. Female disabled adults as well as the female transitioning transgendered people are at most risk. Trans women of color with disabilities would probably be at a considerably high risk of being murdered, so let’s start with recognizing these people for people. Next, teach your at risk child the importance of self defense. As a parent, you want what’s best. I wish my parents had given me the opportunity to do karate or a form of martial arts. There is one guy I know who knows all the martial arts he can, and it doesn’t mean he can punch people out when they don’t respect his boundaries. The first step, according to my ex who did tae kwon doh, is diplomacy. Just your words can make a difference, but in mass shootings and all out attack situations, transgender people of color with disabilities should be alert at all times, and keep doors and windows locked like any other person. IF you’re talking someone in a wheelchair, this gets a bit more complicated. I have friends who are transitioning but that can wait for another story. If you’re talking any trans woman with a disability, as a parent, your job is to support their lifestyle no matter what. I’ve received my share of right wing transphobic commentary in my inbox, no names of course, but it bothers me that transgender rights and the right to exist for all people is not written somewhere.
  6. Support your child’s decisions, regardless of your feelings towards LGBTQI+ and black and other minority groups. If your kid came out to you as male to female transitioning or female to male, no matter what the issue, you must never leave them to rot in the Conservative family you may be a part of. If you are a transgender youth or someone in the LGBTQI+ category seeking help because your parents won’t listen, the Trevor Project is the first thing to jump out at me. http://www.thetrevorproject.org if I’m not mistaken.

When your child becomes a senior citizen, you’ll likely be dead yourself, but if your child is dead before your other children grow, remember that your loss is still painful as everything else involving death is painful. If your child with disability has a terminal illness, make sure you are granting them wishes: Make a Wish Foundation will grant wishes to terminally ill kids, so get your chapter involved in granting your child’s wish. St. Jude Children’s Hospital in Memphis, Tennessee does research on childhood cancers, and a lot of us are aware of all this, but St. Jude would be just one of many things I’d do if my kid had cancer, should that be a part of my equation. If your child has another form of terminal illness, sickle cell anemia included, be sure you still get with your hospitals and Make a Wish and treat this as an opportunity for your child’s dreams to come true. When they pass on, you will have the satisfaction in knowing the child got what they needed or wanted. There were twins who went on a Disney cruise together before little Dante, one of the twins, died of leukemia. Dante had money raised for him, and I felt like it was the coolest thing ever. There was a girl with Ret’s Syndrome who went to Disney and now, she has photos of the times she spent with the Disney cast, all of these help with crises she has to endure in a sense because of her Ret’s.

Now, let’s move on. I will write something about a road map for aging seniors and parents in another post. But today, I have a date with my man and a couple of people we know. We’re going to Westminster to have some fun, so hopefully we won’t run into anything.

Thank you all for reading this and have a nice day.

Beth

Positively Inclusive

Dear readers,

Recently, the Autism Self Advocacy Network has ended its partnership with Sesame Street, a well known children’s educational franchise that recently, up to this point, was supposed to put out positive and inclusive messages about autistic children and their families. However, Julia, the muppet with autism, got a change of narrative due to the toxicity of Autism Speaks and its philosophy. Let me tell you, I may not be autistic, but this is also highly offensive narration toward those with physical and emotional disabilities. Julia’s family should be seen as positive for her sake, but Sesame Street’s ill fated partnership with Autism Speaks has spoken volumes about how parents feel about autistic children and their lives.

Let me use an example, my friend Clayton’s daughter is autistic, and her parents are divorced of course. What bothers me most is the lack of positive and inclusive media out there that the daughter can get a hold of that speaks the truth: that autism is not an inability but yet it is a difference, and kids should respect that difference. Little Vivian will grow up being bullied in school, kicked out of schools repeatedly, and if she fails at social conformities, forced to be a ward of her mother, guardianized and put under more threat of abuse and harm. This is all because we fail as a society to include Vivian in our narrative. While Vivian is a real person, and Julia is a muppet, there should really be no difference in how each is treated. Here’s a few remedies that might help Vivian through this negative change of narrative in the media.

  1. First and foremost, Vivian must be exposed to books that speak in a positive and inclusive language about things like disabilities, interracial marriage, and other things she might run into. Disabled females in the literature I want to see must be the lead characters, do incredible things, and face off against the toxic narrative of negativity, exclusivity and ableism. Books are a vehicle to life itself, and I didn’t discover any blind female leads until I met Susan Oldknow, a young woman in the Treasure of Green Knowe book which is written long ago by an author few have heard of, L. M. Boston. Though the actual protagonist is a boy, the majority of the story takes place while his grandmother is speaking the narrative, and Susan grew up before the invention of Braille. You can read more about her story in the essay, A Choice of Virtues by Deborah Kent Stein. I think it’s just under Kent though, but this essay was helpful, and I delved into the Green Knowe book and found Susan’s story to be what, oddly enough, kids need to hear and see. I wish I’d read this as a child. Mary Ingalls, by the way, was written in as blind because I have this theory Laura was jealous. Very jealous of Mary, I thought, and it showed in the Little House in the Big Woods. But what Vivian and other children must read is something akin to Susan Oldknow’s story and her adventures. There are far too few of these, so if any disabled authors or any good authors write a book, I’d suggest collaborating with real disabled people with experience in being this way to get the job done. Females with disabilities being at most risk should be portrayed in the literature as the most capable and competent people, in any case more than the opposing parties who see her as helpless and delicate.
  2. The next thing this little girl will see is movies. I have yet to see Holywood portray blind people as themselves, and Vivian’s dad, my friend Clayton, wanted to audition for a competent blind man role in the series In the Dark. I bet many blind men would audition for this role, but what about a blind female to replace the disaster they cast as the protagonist? Please, as the Federation puts it, let us play us. Autistic children and women should also be portrayed in movies and video consumer media such as games in a way that puts them in a positive light. Little Vivian doesn’t need to necessarily watch Sesame Workshop’s content since they switched the narrative. However, she does need consumer content that impresses upon her that it’s okay to be you, it’s okay to be different, and you will not worry about getting hurt because the world has your back. Autism Speaks doesn’t speak that way toward people, and that is negative to begin with as well as dangerous. If Vivian grows up to be a model or a fashion designer at 22, good on her. However, at the peak of her fertile period, age 15 and at the oldest age 25, she could be exploited or raped by an older man. This is not saying it will or won’t happen, but I have seen it all myself, many girls with neural differences or disabilities face a greater risk of sexual exploitation. What we need to do is give this little child a chance to see the positives, and be able to face off villains and monsters in her world. And what are the villains and monsters? It all boils down to a few things: sexual predators in and out of school, her teachers included. She could also face bad employers, horrific family, friends who turn on her, and many more things she’ll have to face. These people need to consume the same media so they can be neutralized, and fast, so that this girl doesn’t have to worry about living in a 13th story run down shack with no hope of buying a home. Her dad wants to leave an estate, but I think he should be the author of some books, but as he says to me, I have no time for writing such things. However, a children’s book about the autism this child faces is a start, but if Mom isn’t in the room, or she wants a good film to watch, why not provide such a thing? When she becomes a teenager, she’ll need to see good portrayals of autistics in the consumer media like books, movies, and so on.
  3. School assignments cannot contain toxic and negative rhetoric toward disabled people. All public school should be required to take a disability studies course that goes through high school. Perhaps the teachers should start first, however. If I was going to be a schoolteacher, the first thing I’d do is take such a course, covering the history of disabled United States, the history of blind people, legislation that affects policymaking, and so much more. This will help my future students cope with disabled students in their classes. If by chance I had a child with autism in my class, I’d have to use the two examples of books and film that positively includes autistics, and moreover, I’d use friends’ accounts of being high or low level autistics, whatever. I don’t like functioning labels because they had a deadly past, so let’s stay away from that. Autistics or whatever, they’re all the same to me.
  4. If the children and adults in an autistic’s life present themselves to be negative due to consumer media, toxic feelings, and other problems, there must be a shelter that can help with the girls, and yes, a separate place for boys. However, since girls are at greater risk of being murdered by their families, sexually exploited or raped, or otherwise mistreated, there must be more resources available to them. As a schoolteacher, you should be able to tell your student at risk where to go for help, give them the names of therapists, and have a parent conference with the parents and student if necessary.

Here’s the way a typical parent conference should go, should things get toxic.

 

Teacher. Hello, parents, I’d called this meeting because your student expressed concern about abuse, and from what student said, (insert name of relative/other party) raped/abused/beat her. I’d like to explain what resources are out there to help your child should this continue. For one, I want to initiate a call to the appropriate law enforcement and for another, I want to encourage you and your child to have a better relationship, free of abuse and toxic things, or else I as the teacher will have to call Child Protective Services on you guys for failing to protect your student child. (pause for parental response. Second part follows.)

Teacher. I want to ask you a few questions. First, what do you blame for the problems in your home? I want to see if the child’s disability is too much. If so, have you consulted appropriate educational material in my classroom? (pause for response. Next few questions follows.)

What have you done to protect your child student from harm or this person’s action? What other disabilities do you think are a problem, but furthermore, do you or your family want to pursue family counseling?

 

Something similar to this script should be done in cases where the child is bullied, abused, or in some cases, in a very hard foster situation. As a disabled woman whose parents blamed me for everything, I know what works and does not work. Below is a few suggestions for therapists, some I’ve written before, but this is a model that all therapists should do. This comes from the pen or the keyboard per se of a disabled patient herself. What I’m writing here is nothing short of an opinion, but it is an objective opinion based on experience.

 

  1. Do not allow a family to openly blame a child’s disability on their problems.
  2. Do not demand that the child conform to the system, but rather, allow the system to help the child and cater to that child’s needs.
  3. In cases of incest or rape of a female patient, do what you normally would do with trauma victims, but with developmentally disabled females, break it down as always. Depending on the child’s or adult’s age of understanding things, talk to this person about sex and sexual matters. The family system may not be set up for this talk of sorts, so get the parents in the room while you talk to your patient. Next, ask the parents whether they are aware that this person or your patient/client knows any such thing about sex or sexual matters.
  4. Address boundary setting. Parents should know that all children have some degree of a boundary. When a grandmother kisses her grandson on the lips or cheek, he may reject this. He may then suggest, “Grandma, why not just hug me or shake my hand?” The same goes for Uncle Pete and his niece, or any two people where one is an adult and the other a child. This will help the client, likely a teen patient or young child, survive sexual abuse or unwanted touching. Boundaries aren’t the only thing.
  5. Encourage your client/patients to do self defense and empowerment classes so that they can learn how to defend themselves from possible injury or attack. You’d be surprised what these ladies and gents can learn about self defense.
  6. For male and female or even pansexual patients with LGBTQIA+ leanings or affiliation, please refrain from doing conversion therapy by order of the parent or guardian. This is now illegal in the state of Colorado and so many other places, so read up on your state’s laws regarding this practice. No matter which state, however, do not perform the practice because this will in the long run hurt someone deeply.
  7. For blind and visually impaired parents and clients alike, make sure your material is in Braille or electronic format on a small handheld thumb drive. I understand about confidentiality, but using secure apps like Denver Health’s MyChart, which include questionnaires, can be helpful to therapists with blind clients or guardians who are blind as well.
  8. For nonverbal clients, know your ASL. If you really want to work with disabled kids, learn ASL or a country’s sign language. If you aren’t able to do that, or if you’re a blind therapist, use a Deaf Blind Communicator from HumanWare to talk to nonverbal clients. You will be shocked what they say, and surprised by the tools they might use. IF you’re not Braille literate, now’s the time to invest in your Braille skills, of course.

While some people might find some of these guide hints hard to do, I think it’s very important that the system does not make it so that the child fails. In just about every case, the system failed the community of disabled children and their parents, and we have media, TV, books, and negative messages in therapy to blame for all this. Clayton’s daughter will need to receive the best possible shot from a system that cares, which includes good literature on her differences, good consumer media that shows herself in a positive circumstance, and a good healthcare system of doctors, professionals, teachers included in this one, therapists and social work professionals. When she becomes an adult, I hope Vivian has a huge shot at doing things her way, which might include being a veterinarian, or maybe even a secretary, a doctor, or anything she wants to be. She could study the brain, study fish, whatever she wants. Maybe she’s a huge science nerd, and one day might study what lives around and within us. She could find a cure for what ails us, and this little girl could be the next Nobel laureate in anything from literature to medicine to music, and who knows? Her work could change the world, but we must begin with a system that cares. What does that look like? Just try the suggestions above, read good books, write good ones too. Collaborate with positive authors and actors to create the consumer media we now must create in order to reverse the toxic ableist narrative that currently pervades our world.

I’d like to thank all my friends with disabilities, my therapy user friends, and others for contributing valuable information to this report. Autism Self Advocacy network will always be number one in understanding, and above all accepting autism. Sesame Workshop needs to change the narrative, go back to what they were doing, and give autistic kids the positive family narrative they deserve.

Beth