Disabled Sibling Quotes

I'm always going to be the sister of a kid with a birth defect: that's not the issue. I just don't always want to be defined that way.

At the risk of seeming like a Christian, or a Che Guevara poster, love is bigger, huger, more complex, and more ultimate than petty fucked-up desirability politics. We all deserve love. Love as an action verb. Love in full inclusion, in centrality, in not being forgotten. Being loved for our disabilities, our weirdness, not despite them. Love in action is when we strategize to create cross-disability access spaces. When we refuse to abandon each other. When we, as disabled people, fight for the access needs of sibling crips. I’ve seen able-bodied organizers be confused by this. Why am I fighting so hard for fragrance-free space or a ramp, if it’s not something I personally need? When disabled people get free, everyone gets free. More access makes everything more accessible for everybody.

I think we're all just doing our best to survive the inevitable pain and suffering that walks alongside us through life. Long ago, it was wild animals and deadly poxes and harsh terrain. I learned about it playing The Oregon Trail on an old IBM in my computer class in the fourth grade. The nature of the trail has changed, but we keep trekking along. We trek through the death of a sibling, a child, a parent, a partner, a spouse; the failed marriage, the crippling debt, the necessary abortion, the paralyzing infertility, the permanent disability, the job you can't seem to land; the assault, the robbery, the break-in, the accident, the flood, the fire; the sickness, the anxiety, the depression, the loneliness, the betrayal, the disappointment, and the heartbreak. There are these moments in life where you change instantly. In one moment, you're the way you were, and in the next, you're someone else. Like becoming a parent: you're adding, of course, instead of subtracting, as it is when someone dies, and the tone of the occasion is obviously different, but the principal is the same. Birth is an inciting incident, a point of no return, that changes one's circumstances forever. The second that beautiful baby onto whom you have projected all your hopes and dreams comes out of your body, you will never again do anything for yourself. It changes you suddenly and entirely. Birth and death are the same in that way.

I grew up with a sibling who has a disability, and I witnessed firsthand the struggles they endured and still go through. I've heard both able-bodied and disabled people alike tell disabled people that they're fine the way they are and don't need to change. I agree with this completely---but the reality is unless you've lived with it day to day, or observed someone living with a disability every day, you can't possibly understand how hard it is to embrace that mindset. Much of our world---from our transport systems to our social and health care systems, is not set up in a way for individuals with disabilities to thrive. This lack of accessibility can lead to emotional distress, reduced educational and work opportunities, and increased isolation, among other things. Today, people are more sensitive compared to the lack of inclusion, equality, and autonomy that occurred in the era The Circus Train is set, but I think many people still may not consider accessibility issues, so I wanted to offer insight through Lena's experiences.

PATTERNS OF THE “SHY” What else is common among people who identify themselves as “shy?” Below are the results of a survey that was administered to 150 of my program’s participants. The results of this informal survey reveal certain facts and attitudes common among the socially anxious. Let me point out that these are the subjective answers of the clients themselves—not the professional opinions of the therapists. The average length of time in the program for all who responded was eight months. The average age was twenty-eight. (Some of the answers are based on a scale of 1 to 5, 1 being the lowest.) -Most clients considered shyness to be a serious problem at some point in their lives. Almost everyone rated the seriousness of their problem at level 5, which makes sense, considering that all who responded were seeking help for their problem. -60 percent of the respondents said that “shyness” first became enough of a problem that it held them back from things they wanted during adolescence; 35 percent reported the problem began in childhood; and 5 percent said not until adulthood. This answer reveals when clients were first aware of social anxiety as an inhibiting force. -The respondents perceived the average degree of “sociability” of their parents was a 2.7, which translates to “fair”; 60 percent of the respondents reported that no other member of the family had a problem with “shyness”; and 40 percent said there was at least one other family member who had a problem with “shyness.” -50 percent were aware of rejection by their peers during childhood. -66 percent had physical symptoms of discomfort during social interaction that they believed were related to social anxiety. -55 percent reported that they had experienced panic attacks. -85 percent do not use any medication for anxiety; 15 percent do. -90 percent said they avoid opportunities to meet new people; 75 percent acknowledged that they often stay home because of social fears, rather than going out. -80 percent identified feelings of depression that they connected to social fears. -70 percent said they had difficulty with social skills. -75 percent felt that before they started the program it was impossible to control their social fears; 80 percent said they now believed it was possible to control their fears. -50 percent said they believed they might have a learning disability. -70 percent felt that they were “too dependent on their parents”; 75 percent felt their parents were overprotective; 50 percent reported that they would not have sought professional help if not for their parents’ urging. -10 percent of respondents were the only child in their families; 40 percent had one sibling; 30 percent had two siblings; 10 percent had three; and 10 percent had four or more. Experts can play many games with statistics. Of importance here are the general attitudes and patterns of a population of socially anxious individuals who were in a therapy program designed to combat their problem. Of primary significance is the high percentage of people who first thought that “shyness” was uncontrollable, but then later changed their minds, once they realized that anxiety is a habit that can be broken—without medication. Also significant is that 50 percent of the participants recognized that their parents were the catalyst for their seeking help. Consider these statistics and think about where you fit into them. Do you identify with this profile? Look back on it in the coming months and examine the ways in which your sociability changes. Give yourself credit for successful breakthroughs, and keep in mind that you are not alone!

Charles had an inbreeding coefficient of 0.254, making him slightly more inbred than a child of two siblings (0.250). He suffered from extensive physical and emotional disabilities, and was a strange (and largely ineffective) king.

Families are finding that they are getting funding from a variety of sources. One typical family has counseling covered through their insurance for family counseling, and counseling funded by a federally funded adoption support program for their child. They receive respite care funded through the Division of Developmental Disabilities. They pay privately for Sibshop, a well-loved program for the siblings of their special needs children. Since the Sibshop is through a non-profit organization, it is particularly affordable. Their school district pays for tutoring. After they specifically requested a review, they received an adoption subsidy available to older children through their state. The cost of braces was partially reimbursed by the adoption support system, as well. The combination of resources and financial relief allowed the parents to enjoy some outings, plan a simple family vacation, and get some household help. They said, “Without this help, we would not have made it as an emotionally intact family. We would not have disrupted, but we would not have been the unit that we are today.

We have an almost equal mix of children with and without disabilities. Thorin wouldn’t be the only child with Down syndrome.” Ward asked, “How’d you create that ratio? Why would parents when’d their children here if they didn’t have a disability?” Louise smiled. “Some parents believe diversity of all kinds is important to their children’s development. Also we have numerous siblings here. Parents want their children at the same school.

While some siblings accept, and even embrace, their destiny as members of the 'team,' others are (mostly privately) outraged, having experienced the obverse of the soothing stereotype in their own families. A graphic designer whose autistic brother tried to strangle her when they were children, and who struggled for years to get her parents to recognize the danger he presented, is acutely aware of the discrepancy between the illusion and the reality of damaged families: I'm trying to eradicate the Hallmark Hall of Fame Special myth - 'how I learned the meaning of life by having a disabled sibling.' The cover of Newsweek on autism had a beautiful blond good boy. People just want to look at the pretty kids on Jerry Lewis, the sanitized version, not the ugly cases like my brother. The severely disabled aren't telegenic.

For God’s sake, Eve Windham, it was just a kiss under the mistletoe, probably inspired by your papa’s wassail more than anything else.” She had to put her hand on his arm while the feeling of the ground shifting beneath her feet swept over her. “My brothers said it was white rum.” “The occasional tot makes the holiday socializing less tedious. You really do not look well.” The last observation was grudging, almost worried. “I did not mean to swill from your glass, Deene. You should have stopped me.” They had to get to the coach. The night felt like it was closing in, and Deene’s voice—a perfect example of male aristocratic euphony—was swelling and shrinking in the oddest way. “I might have stopped you, except you downed the whole drink before I realized what was afoot, and then you were accosting me in the most passionate—” Eve clutched his arm and swayed into him, breathing shallowly through her mouth. “If you insist on arguing with me, my lord, I will be ill all over these bushes.” “Why didn’t you say so?” He slipped an arm around her waist and promenaded her down the steps. By the time they got to the garden gate, the nausea was subsiding, though Eve was leaning heavily on her escort. She had the notion that the scents of cedar and lavender coming from Deene’s jacket might have helped quiet her stomach. Deene ushered her through the gate, which put them on a quiet, mercifully dark side street. “How often do these headaches befall you?” “Too often. Sometimes I go for months between attacks, sometimes only days. The worst is when it hits on one side, subsides for a day, then strikes on the other.” Deene pulled one of his gloves off with his teeth, then used two fingers to give a piercing, three-blast whistle. “Sorry.” All the while he kept his arm around Eve’s waist, a solid, warm—and quite unexpected—bulwark against complete disability. “The coach will here in moments. Is there anything that helps?” “Absolute quiet, absolute dark, time.” Though her mother used to rub her neck, and that had helped the most. He said nothing more—Deene wasn’t stupid—and Eve just leaned on him. Her grandmother had apparently suffered from these same headaches, though neither Eve’s parents nor her siblings were afflicted. The clip-clop of hooves sounded like so much gunfire in Eve’s head, but it was the sound of privacy, so Eve tried to welcome it. Deene gave the coachy directions to the Windham mansion and climbed in after Eve. “Shall I sit beside you, my lady?” An odd little courtesy, that he would even ask. “Please. The less I move, the less uncomfortable I am.” He settled beside her and looped an arm around her shoulders. Without a single thought for dignity, skirmishes, or propriety, Eve laid her head on his shoulder, closed her eyes, and was grateful. ***

Mario had gotten his pants on and was using his special tool to zip and button. Mario worked his tool with great patience. It often took him several tries to catch and engage the tool’s jaws on the tongue of his zipper. I helped Mario on with his police lock’s vest and affixed the Velcro nice and tight. Mario’s chest is so fragile-feeling that I could feel his heartbeat’s tremble through the vest and sweatshirt.

Another unnerving aspect of the homestudy is the checklist you have to fill out to indicate what kind of child you are willing to accept. Will you take a child with a physical deformity? A medical condition? Cognitive delays? What race are you open to? Will you take siblings? What ages are you willing to accept? Filling out this checklist felt like a measure of my humanity. I felt like, if I was truly unselfish, I would check yes on every single box. What kind of person says no to a child with a disability? No to a cleft palate? What are you, a monster? These are questions most parents will never be asked. When you give birth to a child with a disability you deal with the hand you are dealt. When you get a checklist, you have to make some brutal decisions that make you feel like an asshole.