Blog

“We should not, however, lose sight of the fact that people living with impairments can experience negative effects tied more directly to their bodily conditions. People with impairments that involve, for example, fatigue, pain, depression, or chronic illness may want both to overcome social barriers and discrimination that oppress all people with disabilities, and to voice their desire to remove or address the troubling accompaniments of their impairments, through medical or other means.”

“I want to have more energy and less pain, and to have a more predictable body; about that there is no ambivalence….Yet I cannot wish that I had never contracted ME, because it has made me a different person, a person that I am glad to be, would not want to have missed being, and could not imagine relinquishing, even if I were ‘cured.’ … I would joyfully accept a cure, but I do not need one.”

“Some conditions of the body may be inseparable from physiological suffering (e.g., living with chronic pain or nausea), but the ways of life that people form within them may be quite valuable, and the suffering they experience may play some significant constituent role in what brings the value.”

“There are, I think, many versions of disability pride.”

A central principle of Disability Wisdom is the idea that impairments are not always negative for everyone all the time. In fact, when I give training presentations, I often start by distinguishing between impairment and disability. “Impairment” is a physical or mental difference, while “disability” is the disadvantage that can occur when attitudes or environments are incompatible with that difference. This concept is often known in academic circles as the “social model” of disability.

However, as this excellent article points out, sometimes a pure social model doesn’t fully capture people’s experience with impairments. This may be especially true for medical conditions that cause inherently unpleasant symptoms (such as pain, nausea, or depression); conditions that get progressively worse or vary over time; or conditions that threaten life expectancy. For these types of impairments, people may genuinely suffer and they may desire medical treatment. But, at the same time, people might still place some positive value on having the condition. This article urges medical professionals and disability scholars to take a more nuanced view of impairment, disability, and chronic disease.

Rethinking disability: The social model of disability and chronic disease

“Anyone who knows me can tell you that in my world, ‘let’s share a fun fact!’ is roughly equivalent to ‘let’s take a field trip to hell on a paratransit bus!’ Oh, wait. That’s redundant.”

“Well, friends, before you die just thinking about fun fact circles, today I am sharing a fun fact about myself that I think is pretty neat: I can pee out of my belly!”

“The Mitrofanoff procedure, in a nutshell, involves the creation of a channel between the bladder and the surface of my skin. The channel is created using an unlikely hero, the appendix, which has been repurposed from uncool, rejected vestige organ to nifty pee tunnel.”

“In short, due to my disability, I can’t transfer to the toilet independently. That means a lot of waiting around and wiggling while waiting for an assistant, a lot of pee anxiety, and about 43213421 people seeing me sans pants.”

“I have neurogenic bladder, meaning that my brain and bladder are basically drunk texting each other.”

“In my case, I did not need an augmentation, because as the urologist put so eloquently, ‘you have a really big bladder.’ I’ll be adding this special trait to my resumé, as I’m sure it is prized by employers worldwide.”

“You find out who your people are when you’re peeing your sheets and receiving emails from the chuck sheet company encouraging you to take a quiz about which color diaper matches your personality (yes, really…and I know you were curious, so, purple!)”

“But it feels indescribably good to have more freedom (peedom?) and privacy as I navigate life on wheels.”

This week on the Weekly Wisdom blog, I’m sharing this humorous piece from Kathleen Downes. Ms. Downes blogs about her life in a “squeaky purple wheelchair.” She shares her experience having a Mitrofanoff procedure to increase her independence in toileting.

I Can Pee Out of My Belly!

Parenting is an important life activity for many people-with and without disabilities. Many adults with serious mental illnesses (SMI) are parents. They can be good parents with the appropriate supports in place. However, as this research shows, parents with SMI may face scrutiny from the child welfare system. In this study,  researchers looked at data from more than 28,000 U.S. parents. They found that parents with SMI were eight times more likely than parents without SMI to be contacted by Child Protective Services (CPS) and 26 times more likely to have their children removed from their homes. Fathers with SMI were at especially high risk of losing custody of their children. Although CPS plays an important role in protecting children from abuse or neglect, false-positive reports can have devastating effects on both children and parents. The researchers point out that parents with SMI may not seek needed mental health services for fear of being reported to CPS. They recommend a greater focus on parenting supports for people with SMI. They also recommend that we pay more attention to structural challenges faced by parents with SMI and their families, such as poverty, under-employment, and a lack of access to housing and healthcare.

Read more about the research here

“Imagine sitting at a restaurant with your friends, and the waiter comes and asks your friends for your order, leaving you sitting there looking silly, when you wanted to order for yourself. It’s kind of like that.”

“Would you want to sit down and play with toys for an hour when you really, really didn’t want to? No? Then don’t do the same to others.”

“If you start walking on eggshells, or alternatively, applauding every little step when you are around someone with disabilities, it’s going to come off as patronising. Just act normal and be yourself – that’s what they are doing anyway.”

“You decide what you want to do in your life – how about extending the same right to your fellow human beings?”

This week, I thought I’d leave you with this simple but informative article. Chances are, all of us have either unintentionally done one of these 11 things, or had one of them done to us. Let’s all be more mindful of how we treat one another.

11 Ways You Treat Adults with Disabilities Like Children Without Even Knowing It

On April 19, 2009, I was finishing my first year of grad school. At the end of a stressful weekend working on first-year final presentations, my classmate, Jason, took me out to dinner in downtown Boulder. We had a very pleasant sushi meal, which was made slightly awkward when Jason read the menu aloud-and some of the fancier sushi rolls had sexualized names. But, we got through it. And then, when he dropped me off at home, he kissed me goodnight.

I had dated a few blind guys before, but a sighted guy had never shown the slightest interest in me. I won’t embarrass Jason on this blog, but I will embarrass myself a little by admitting that after he left, I started dancing excitedly around my apartment. Mostly because I really liked him and had been staying late on campus just to spend more time with him. But also because I had thought that perhaps only blind men would reciprocate my affections.

Recently, Dr. Phil hosted an “inter-abled” couple on his show-the man in the couple has a spinal cord injury and requires regular caregiving. Dr. Phil got himself on the wrong side of the disability community by asking the woman why she wanted to date someone “in a wheelchair.” Then he declared, “You can be his lover or you can be his caretaker, but you can’t be both…It won’t work, 100 out of 100 times this won’t work.” This has prompted a firestorm of response from successful, happy inter-abled couples-using the hashtag #100outof100.

Jason and I have been together for ten years. After sharing four different apartments, today we are moving into our first home that we own. (Well, technically we own 51% of it; the bank still has the other 49%). In celebration of the happiest decade of my life, and the permanence we have achieved together, I want to jump on the #100outof100 bandwagon. Here are some photos of us through the years.