Why the Disabled Don't Advocate for Themselves

Have you ever had to reach the top of a shelf at the grocery store for something you want? That one item on your list that completes the shopping so you can go home? You stand on your tiptoes and can lightly caress the item, but you can't reach. You are struggling and annoyed. If you could reach that little bit more, then the item would be in your hand and you could move on with your day! In your mind, you are calculating how long it is going to take to find someone tall enough or, worse, find a stock person to get that item for you. You're kind of embarrassed to ask a tall stranger, but it's better than finding someone who works there who is going to have to find a step stool or those rolling ladder things. What a pain in the butt for one item on your shopping list. Why can't they stock the shelves better and make things more accessible?

This is the shame and embarrassment that people with chronic illness and disability face daily. Their metaphorical grocery store items are always on that top shelf just out of reach. And if they don't LOOK what society has come to accept as "disabled," missing a limb or four, then the person must not be disabled, is taking advantage of the system, or isn't tough enough to "make it work."

With one look, the question isn't "I wonder what challenge they face." It is just judgment. I am either not handicapped enough or I really like parking out front and am faking it.

This is the place where advocacy starts. Trying to slowly change the hearts and minds of society to be more accepting and understanding of people with visible and invisible disabilities (disabilities that are not easily discerned or apparent). Those of us with disabilities, however, have a whole lot of internalized ableism in our heads that keeps us from advocating for ourselves.

We have all been trained not to show weakness. It used to be a biological imperative. We are hard-wired, if you will, to disguise and hide our weakness, disability, or chronic illness, lest we be singled out in the herd of society.

Additionally, there is an assumption of health when we look at each other. We don't naturally look at others and wonder what is wrong with them. We would all have compassion fatigue if we did. However, that doesn't negate the fact that 1 in 4 adults in the United States is struggling with some form of disability.

Further, in the United States, we have been taught that to get ahead and be a productive member of society, we must overcome our challenges. If you can't, then there is something wrong with you.

And lastly, if your disability is invisible or not readily identifiable, then it must not be real. Or you are exaggerating your disability or illness. Or you are trying to cause trouble, anything but telling the truth without exaggeration.

Why am I so sure of this? Because I have been on both sides of this coin. I once looked down on "healthy" people using the handicap spot. I met people who I was sure were "hypochondriacs" or simply overstating their challenges for sympathy points.

Now, as a legally disabled adult, I am so frustrated. The accusing stares and disapproving glances follow me daily. I am not alone. Just today, someone left this Facebook message for me.

"Some days I'm sad or mad at myself because I have to ask for help with tasks around the house or store. I do my best to be patient with myself and others. Even when my pain is off the charts, I try to keep going."

Does this sound like someone gaming the system?

The fact is, the vast majority of all of us are doing everything we can to achieve as much as we can every day. It is a cynical, ableist view to believe chronically ill and disabled people want sympathy points, a good parking spot, or are overestimating their illness.

And when the glares and disapproval come from the spiritual safe haven you are trying to participate in? It is so much worse. Because people who should know your character and devotion to goodness, rightness, and love are unconsciously and consciously making assumptions about you, cutting to the core of your sense of self-integrity. Instead of focusing on your spiritual growth and development, you end up focused on being as normal as possible to avoid causing a fuss in public.

My disability is that I pass out, dramatically. Most people haven't seen this because of the careful control I exercise in public. I am always worried about being alone and taken to the hospital for an expensive ambulance ride and Emergency Room visit, knowing there is fundamentally nothing that can be done for me.

Because most people haven't seen me pass out, there seems to be an assumption that I am exaggerating my condition. The fact is I am much more likely to pass out at home because I am not as conscious of my condition there I let me guard down.

Recently, our air conditioning unit died (we live in the deep, hot South). There was a knock on the door, and knowing it was the workers, I jumped up from the couch I had been sitting on, made it to the door, opened the door, and then passed out on the HVAC guy. When I pass out, I can hear but can't see, I could hear this poor guy screaming for my husband, Tony, while trying to stop me from hitting my head. My long-suffering husband could be heard yelling, "It is okay. I am coming."

Clearly, there was an expectation that I would need an ambulance or something, but Tony convinced him we could handle it, and I was carefully maneuvered back to the couch. Later, the same HVAC technician asked where the junction box was, and I told him I would get up and show him,

"NO!" he shouted suddenly, "I mean, I would rather you tell me."

Laughing, I said, "That's fair. I have already passed out on you once today," and told him which closet it was.

This demonstrates all the reasons why, when you meet someone in public who is disabled, they are carefully controlled and doing everything in their power to avoid causing a problem.

We don't want others to look at us differently. Every time, after this incident, when I walked into the room the HVAC Tech would tense and throw his hands out waiting for me to pass out again. He never treated me normally again. It changed our dynamic. I felt like dynamite that he was waiting to explode.

I encourage you to think about your own ableist attitudes. When you see someone "healthy" parking in the handicapped spot, check your assumptions. When you see someone with a well-behaved service dog, please don't assume that it is training. When you find someone who looks a little wobbly, try to be kind by keeping in mind that they are a person, not just a disability that may be showing its ugly head.

And if you are disabled, it is time to stop being afraid to take up space. Regardless of our challenges and accessibility needs, we have a human right to take up space and have spiritual places make room for us. We aren't upstarts making waves; we are humans demanding the same care and concern as any other minority. You can friend me on Facebook. I will add you to the Pagans with Disabilities and Chronic Illnesses group, where you can begin to have your concerns heard and counted.

Disability rights are human rights.

•