3 Rules – Disability Etiquette

Etiquette is a part of life wherever we go, and it depends on context. How we behave in one situation can be different from how we are in another situation. We follow etiquette when we socialize, talk to our bosses, and go to the doctor. It can include cultural sensitivity. Using disability etiquette is important for respectfully interacting with disabled people. Here are 3 simple rules:

  1. Boundaries: Disability information is personal, sometimes medical, information. Just as you wouldn’t ask someone personal questions, like how much money they make, it is inappropriate to ask someone about their disability. Asking questions about someone’s disability is invasive and crosses personal boundaries. If someone wants to offer information, that is their choice. But it’s not OK to ask someone questions like, “What happened to you?” or “What’s wrong with you?” Imagine if someone else asked you the same thing and how uncomfortable you would feel. Also, everyone has a different comfort level with sharing personal information. Some people may say that they invite questions – however, that doesn’t mean that it is fine to approach other people the same way. Everyone has their own preferences. ‘Disability disclosure’ is sensitive. Professionals and others are not permitted to disclose a person’s disability. This is unethical. The rest of the community needs to learn more about disability etiquette, and with increased awareness of appropriate boundaries, we can be more effective and respectful.
  2. Equipment, services, and accessibility: When a disabled person uses a wheelchair or service animal, those are extensions of the person that may not be touched without permission. Don’t push someone’s wheelchair without permission and don’t pet service animals (they are on duty). Treat the person’s equipment as part of the person’s ‘bubble.’ Don’t pick up equipment either, such as a communication device. Out in the community, it is important not to create additional barriers for disabled people. Even if you are only going to be a minute, do not ever, under any circumstances, park in designated disability parking spaces. It is an act of discrimination because it makes it harder for a disabled person to access the community. It’s also arrogant and a slap in the face to disabled people, who already deal with enough barriers when trying to participate in life like everyone else. Don’t block disability entrances or door buttons or ramps. And if you use a public restroom, make sure to leave the disability stall available for use. Try to be aware when you are out and about and be open to hearing how you can be a community member who promotes accessibility.
  3. Helping, supporting, and assisting: You may tend to be a helpful, caring person who likes to assist people. You may be a nurturing type, and that’s great. But using disability etiquette, you will not assume that someone needs help unless you are asked. There are some situations when you may ask someone if they need something – for example, if someone is in danger or a crisis. Under ordinary circumstances, resist making assumptions about the person and what they need or want assistance with. If you are going through a door and someone is right behind you, you can hold the door just as you would for anyone else. If you see a disabled person approaching a door, let the person manage it on their own. It may seem to you that someone is struggling, but maybe that is how the person does things. It may look difficult to you, but is fine for them. One way that we can be more supportive is to be aware of our privilege. We don’t decide for someone else, without our privilege, what is best for them. Disabled people have agency over their own lives and it is not your job to act like their caretaker. It’s condescending and patronizing. So to be most respectful with appropriate boundaries, be courteous, but wait to be asked for your help.

There are many more disability etiquette topics. Hopefully this was informative and food for thought. There are lots of articles online to learn more like this one from the United Spinal Association. 🙂

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10 Things You Need to Know About Ableism

Ableism is a term that many people have not heard before. Like all the other -isms (racism, sexism, etc.), it means discrimination – in this case, toward disability. Ableism assumes that being ‘abled’ is the standard, so being ‘disabled’ is inferior. Ableism, like all the other -isms, is complex and hard to understand. But it is rooted in oppression of disabled people. (And I use ‘identity-first language,’ since many self-advocates are starting to prefer that.) There are aspects of ableism that even seem nice! That’s why it can be deceiving, subtle, and perhaps ironic. So here are 10 general things you need to know about ableism:

  1. Pity: Many of our perceptions of disability are based on pity. Often the first reaction to hearing about a person’s disability is grief or regret, or even fear. We have been socialized to consider disability a misfortune or something unwanted. Often, when a baby is born, we hear, “He/she is perfect and has all his/her fingers and toes.” That is sort of an ableist statement because the value is on having a proportionate body. That thinking is extended to our minds, as well. If someone doesn’t fit the prescribed template of what is deemed an acceptable human being, then it is viewed as problematic. We don’t want your pity, though. Gillette Children’s Speciality Healthcare, a major provider of healthcare services to disabled children and adults, created a “Cure Pity” campaign that was aimed at tackling the real barrier: pity. Sure, disabilities can mean obstacles and struggles, but many of them are societal. We can focus on problem-solving and working toward solutions, rather than pitying the individual for being who they are – a full person. We can focus on the social model and address community barriers, instead of treating people as less human.
  2. Tragedy narrative: This is very related to pity. The tragedy narrative is a pervasive, negative story about disability that treats disability like it’s bad. How would you like to be told every day that what you are is tragic? These are messages that get internalized and create social barriers to independence. Instead of thinking of disability as a tragedy, we can reframe it as diversity. It is a normal part of life. Disabled people can and do live great lives! That may surprise some people. Living with disability, my reality is different from how it may look on the outside. Focus on the abilities of the person. And keep in mind that what we value is taught. We just have not been taught much about disability that is accurate. We will live better lives with better understanding. We may need to reject what we have been taught.
  3. Inspiration porn: This is a term that raises eyebrows, because, “porn.” Good. We need to call it what it is. And what is it? This is when disabled people are portrayed as inspirational things, or are objectified for ableist delight. Often in the media, a disabled person will be glorified for something ordinary, as though nobody expected anything from them. If people think you can’t do anything, then of course they will be impressed when you do something basic, like leaving the house. Yawn. How about applauding something actually meaningful, like accomplishing something significant, not just breathing. It is also media representations of people that cast disabled people as dependent on abled people. It’s not disability advocacy to perpetuate disability tragedy stereotypes like helpless, broken victims who need to be saved either physically or spiritually by a non-disabled person acting like a hero. Think about the juxtaposition between disabled and non-disabled people in these scenarios. Disabled people are not objects, props, or tokens to make you look good. We are not special angels or people born to teach us about love. We are every bit as human as anyone else. We deserve respect on our own terms. You don’t need to take us to prom or let us score the winning goal. We’re good. If you want to hold the door for someone, wait until you are asked. The hardest thing for people about this one is it seems so nice! But don’t be fooled. You don’t get to be the saint or hero at a disabled person’s expense. Be your own hero.
  4. Low expectations: Disabled people are underestimated constantly, and it is discrimination. Due to social programming, we don’t expect that someone who is disabled can do as much as a non-disabled person. I call ableism! If someone is physically disabled, assumptions are made about their cognitive abilities. So even if you are a little wobbly, people will also figure that you are mentally incompetent. Not that it’s a bad thing. We don’t understand our own humanity very well. Psychology is still a very new science, and it wasn’t long ago that we held all sorts of ridiculous notions about science. It’s no wonder that we don’t get it yet. IQ tests, for example, are way overrated. IQ does not equal intelligence. It’s one type of test that measures limited information. It’s like using a teaspoon to measure everything in the world. There are many cultural differences, learning styles, and types of intelligence. It is impossible to measure them all in a quantified way. Get to know people. We’re all talented and you can learn from everyone. Disability doesn’t mean inability.
  5. Compensation: This is related to everything on this list. When we feel sorry for someone, we may be inclined to compensate for what we think they are lacking. It may look like bending the rules, coddling, and making excuses. Basically, it looks a lot like enabling because we don’t want to add more burden to what we already feel is a burdened life. Hold up! Being disabled doesn’t mean that you live such a bad life that everyone around you should try to compensate for it. We don’t want freebies and passes because people feel sorry for us. We want equality and access. Everyone is working toward greater self-sufficiency, on their own terms. This means support and appropriate challenges that fit the individual, which should also be ‘self-directed’ or promoted by the person – at times perhaps with support or facilitation. Compensation is like telling people what to do – it takes away their personal power.
  6. Minimization: This is also related to everything on this list. Where to start, there is so much of this. Minimization is when we try to make something small. It goes hand-in-hand with invalidation (rejected, ignored, judged). A statement representing minimization and invalidation could be: “A lot of people have it worse than you.” That type of a statement is essentially saying that your problem is small and you are wrong to feel that way. That does not help the person at all – it’s demeaning. Perhaps the intent is to try to make the person feel grateful, but it says to the person that their disability experience is their fault. Some disabilities are mental illnesses, and that is the worst thing you could say to someone who is depressed, for example. It treats the disability as though it is something you can wish away, when it is a medical, physical condition – including those that are psychological. Have you ever analyzed a brain scan, like an fMRI? OK, then sit down. If you are not a medical doctor or clinical psychologist, specific to that individual, you are not qualified to tell someone what to think or do about their physical condition. Listen and learn, and don’t instruct. You’re out of your league.
  7. Tokenism: People are not things. That is all. Don’t treat someone like their disability is all they are.
  8. Over-helping: Compensation is related to over-helping because people sometimes feel like they need to do more for someone to make up for what they think they can’t do or would have a hard time doing. Don’t just tie someone’s shoes because you think it will take forever and you feel bad for them. Stand by if you are needed, but don’t act like a parent and start doing things for people that they didn’t ask you to do. How annoying! So what if it takes someone longer than you to do what they need to do. They are on their timeline, not yours. Chill.
  9. Poster child syndrome: Back in the day, the Muscular Dystrophy Association did telethons that exploited children with muscular dystrophy for the purpose of fundraising. Barf. They didn’t know better, but they just shouldn’t have. Jerry Lewis, you were better than that. It isn’t fair to make someone into a poster child for their disability type(s). It labels someone as just their disability when that is only part of who they are. It would be like referring to you as only your height or weight. It takes a whole, complex person and shrinks them down to a living stereotype. Please don’t.
  10. Lack of accommodations: The largest issue is the lack of accommodation – not the disability itself. A person with limited mobility who may use a wheelchair is held back by the lack of physical access, for example. Every one of us needs different types of community supports, whether or not we are aware of what they are. We just haven’t typically expanded support to accommodate disability. We change buildings now, like doorways and ramps. But not all disabilities are physical and some of the newest changes have been in technology and content development. Society has typically served a very narrow segment of the population and that is part of the reason that society is comfortable only with a subset of certain diversity spectrums. We can open our minds to consider much more variety of human experience. Then maybe we won’t feel so bad when someone else’s life is different from ours. Universal design is the future, so that we are being inclusive of disability on the front end, and not adding accessibility features as an afterthought. Who wants to be an afterthought? I thought so.

Pop quiz: what is ableism? Hopefully you will remember at least part of this list. And remember, listening, even with conflicting messages from various perspectives, is key to increasing disability understanding. Also, disabilities are all over the map from physical, cognitive, intellectual, developmental, and neuropsychological. You don’t have to be an expert, but you can show you want to make an effort to learn. Thanks for reading and making an effort! 🙂

Disability is Diversity

A lot of times when I tell people that my daughter has cerebral palsy (CP), they respond with all sorts of reactions and usually seem to feel really bad about it. One person recently meant to be nice, but said she basically wouldn’t be able to get out of bed in the morning if that were her. We actually laughed about it because it’s so far from our reality. Society unfortunately sees disability as a tragedy or problem, and that you can’t live a good life. That is so far from the truth. My daughter has had a great life. It has been rough at times, and a lot of it is because society doesn’t get it. As a parent, what has been most difficult is the lack of support, especially as a single parent. It’s been the two of us against the world. The attitudes out there are suffocating. And we know from experience that community support is essential. That’s why it’s important that we promote accessible, affordable healthcare. There are community programs that are critical to living a quality life with opportunities. The reason my daughter has had a good life is not because it’s been easy, but because despite all the obstacles, she has been able to do what she wants and become the person that she is meant to be. We both appreciate all the work that people have done to create a more inclusive society, and we talk about this a lot. Of course there is still a long way to go and a lot of it will come from changes in perception and attitudes. Using a social model, we may challenge barriers, rather than focus on the individual as somehow less human. Every one of us needs different types of community supports, whether or not we are aware of what they are. We just haven’t typically expanded support to accommodate disability. We change buildings now, like doorways and ramps. But not all disabilities are physical and some of the newest changes have been in technology and content development. Society has typically served a very narrow segment of the population and that is part of the reason that society is comfortable with only a subset of certain diversity spectrums. We can open our minds to consider much more variety of human experience. Then maybe we won’t feel so bad when someone else’s life is different from ours.

I will not be owned

What the world does to you as a woman is something to ponder. As a young girl, I was soft and sweet. It was what society expected of me, but it was also my sensitive personality. As time went by, I had to fight, even though I didn’t always want to. It became necessary to survival. When I was sexually abused as a child, a part of my soul was silenced. When I went to college and learned to drive at the same time, after already working for many years, I had to stand on my own. When I left my cult religion, I had to leave everything I had ever known behind. When I became a mother, I had to face the world that considered me and my beautiful gift illegitimate. When I worked to raise my daughter, and balance the world on my shoulders, I also had to teach her how to survive this life as a woman. When I finally escaped every controlling and abusive situation, and there were many, I had to rebel against the system at hand. When I became an advocate, I had to use my own voice, even though people didn’t understand it – so I often spoke alone, though knowing there were others out there who were hearing me and knew they weren’t alone. When I have had to fight because society doesn’t understand how to deal with traumatized, depressed, grieving survivors, I had to know I was enough even though I was told that I was broken. And now as a scarred, tested, wise woman, still not even old, I am this. I will not let anyone beat me into submission, fuck with my mind, tell me what I can’t do, strip me of my dignity, steal my rights, or hush me with their ignorance. I am a woman who has been through the alleys and the valleys, and I may be tired and heartbroken, but I will not be owned. I will not be owned by you for any reason, especially not your desire to kill my spirit as a woman and mother, disabled person, or survivor of poverty and violence. I will not be owned.

I Will Miss Those Days

I remember the days when I had Imani sleep on my chest so she wouldn’t forget to breathe, which happens with babies born very premature (14 weeks early). I remember the days when I felt my heart strings tugged when I watched her ride off on the school bus, and the joy I felt seeing her emerge from the bus when she arrived back home. And now are the days when she is galavanting around her college campus, becoming grown, finding herself, and making her way in the world. And later will be the days that I will miss those days.

Returning to Work After Baby with Multiple Worlds on My Shoulders

There was a pause after a stream of kids got off the school bus in south Minneapolis, and then I saw Cole, who was 11 years old, moving intentionally down the bus steps, smiling and staring blankly, with his shock of blonde hair blowing in the crisp fall breeze. His empty-looking backpack was partway open, but there was nothing at risk of falling out. Without making eye contact, he made a bee-line for the front door, which was open, and barged into the kitchen. On the counter, he found string cheese and peanut butter crackers that I had made for him moments before. As if he hadn’t eaten all day, he scarfed them down and then asked, “Milk?” “Oh, sorry, Cole, I will get you a glass of milk.” “Milk!” he said, raising his voice. “One minute, Cole,” I reassured him, opening the refrigerator door and pulling out the carton of milk – then grabbed a glass from the clean dishwasher, even though it wasn’t dry. Before I finished pouring the glass of milk, he plunked himself in front of the television on his favorite chair, and found “The Simpsons.” Stomping his feet, he laughed and pointed, “Homer is silly!” We shared a chuckle. Then I asked, “Do you want your milk now?” “Yes!” he replied, taking the glass and drinking it down.

When the episode was done, I asked him if he wanted to do some stretching exercises and he agreed, picking up a toy truck he liked to play with. First we took off his leg braces, and he sat on the floor. Starting with his calf muscles, I held his left knee and pushed his foot toward him, then did his right side. In ten minutes, I stretched his calves, hamstrings, quadriceps, and hip flexors, to keep him limber because cerebral palsy causes muscle spasticity.

Cole was also autistic and intellectually disabled. He needed constant supervision and support because he was vulnerable and unsafe if left alone. Sometimes he got very anxious and overwhelmed, so he would hit and throw things. Once already, he had hit me in my pregnant belly when he wasn’t able to regulate his emotions. He didn’t want to feel like that, he couldn’t help it. I understood because I had anxiety and depression. We went to his local community center to play sports with other kids his age. They included him and treated him like a regular person. We enjoyed doing things together after school, and we had our routine.

After stretching, Cole liked to relax with video games. That was when I normally went to the bathroom to pump my breast milk for Imani, and put it into small plastic, labeled cups. It took me about ten minutes if I turned the machine on high, with both sides attached to suction cups that attached to milk bottles. Cole’s sister, Ricky, sat with him while I was gone, but I still hurried.

My breasts were tender as I turned off the suction and pulled the cups off. Every two hours, around the clock, pumping had to be done to produce enough milk and not dry up. This included getting up every two hours in the night to pump, so of course, I never slept. It took time to set up and finish, besides the actual pumping, and then it took a while to fall back to sleep – as exhausted as I was. Breast milk is recommended for babies, especially premature babies who are underweight and trying to catch up from the time they are born. Every day, I slept for about an hour at a time, worked all day, and was still recovering from child birth without a maternity leave. It was mere days until I returned to work, still stapled from a cesarean section, and trying not to tear the incision open as I did personal care assistant work for several people: Cole, Mark (a quadriplegic), Matilda (an elderly woman), and an elderly pair of sisters, Marie and Martha. This was where the benefit of youth made a difference, because for three months until my daughter came home, I slept a few hours a night – and then I continued to sleep a few hours a night. Looking back, I don’t know how I was able to function doing all that on my own as a 19-year old single mom with virtually no support system.  I worked incredibly hard.

“Ricky, you can go in a minute, I’m just about done,” I yelled down the stairs, peeking out of the dirty bathroom that looked like it hadn’t been cleaned in months. Ricky didn’t say anything. She was quiet and seemed depressed, rarely smiling. It was hard to know what she was thinking, and she didn’t share. On my way back down the stairs, I was met by Cole’s mother, Beate, who practically cornered me. “Marriage is hard enough without a disabled child,” she hissed. Stunned, I had no time to react, just looked at her with big eyes that conveyed no understanding of what she meant. My heart started to race as I slowly distanced myself from her, returning to Cole, who was shrieking in the living room.