Blind humor: Living with a sighted person

I break from work in the afternoon and go downstairs to brew tea for me and my mother. The electric kettle sputters and pops with a comfortable, homey sound.

I reach up to the second shelf and snag a couple of pottery mugs. My thumb and ring finger go around the handles and my forefinger and middle finger each go inside a mug. It's a quick grab and a secure grip. 

Image of Arie Farnam with long light-colored hair unbound and eyes closed as she looks into a fire at night

The mugs clink as I set them on the counter but then I feel the grime and stickiness on the inside and I pick them back up again.

"We need to check the spinning arm in the dish washer again," I tell my mom, as she comes in from her painting work.

"Whatever," she says with emphasis. "They look clean to me."

We've had this conversation a thousand times and I try not to bristle. I try to remind myself that it isn't exactly that she doesn't believe me. It's just a different way of looking at the world.

"There are fairly large chunks of greasy gunk inside the cups," I tell her, while I scrub and then add soap and scrub some more to get the super-heated dishwasher sludge off of the inside of the mugs.

"I believe you," she says. "It's just that if it looks clean visually, I don't care." 

I bite back a retort about how bacteria don't care what she can see and put the newly washed mugs out to pour the tea. 

This wasn't a crucial or dramatic incident nor was it the straw that broke my back. But it was telling and clear. I suddenly realized that there is an art to getting along when we see the world differently. And so, I started mulling over a list of tips for blind and partially sighted people who live with a sighted family member or roommate. 

Some of the common issues can be humorous, but I do mostly mean what I say.

Image of a red tea kettle blowing clouds of steam - Creative Commons image by Benjamin Lehman 

Tips for living with a sighted person:

1. As noted above, dish washing and other things requiring attention to invisible hygiene are not their strong suit. When I pick up a mug or a spoon, my hands automatically inspect it, I suppose just the way a sighted person's eyes do. But my hands detect a lot of crud that a sighted person's eyes don't. Sighted people are, however, excellent at dusting shelves, vacuuming and mopping floors. Divide up household tasks based on each person's strengths to minimize the need to correct and the incidence of food poisoning. 
2. Try not to lose patience with their vague sense of location and statements such as "It's over there." Remind them gently to use specific words, and set a good example by giving them cues they can follow when directing them to find objects. This generally means referencing a significant physical object that they can see when you are giving them directions. Don't say for instance, "Your keys are at four o'clock three feet ahead of you," because they will often find this too technical and confusing. Instead say, "Your keys are behind the coffee pot." I know it may feel counter intuitive, but this can ease communication.
3. It is a generalization but also often true that many sighted people have poor organizational and memory skills. Due to their reliance on visual cues they haven't exercised the muscles of memory and categorization. This is a common sticking point in household conflicts because sighted people have difficulty using organization systems for clothing, cooking utensils, spices, paperwork or household clutter correctly. Again patience is needed. Explain the need for the organization systems that keep your home running and which keep them from having to do all the housework and cooking without your help. Then remind gently and avoid a critical or irritated tone as much as possible.
4. While floor clutter is related to the point above, it deserves its own point because of the potential safety hazards. Your home is one place where you can move around freely and quickly. Floor clutter destroys your sense of home and makes the daily routine difficult and even dangerous. Sighted people, particularly children, create floor clutter without even noticing. Believe me when I say that it is not specifically intended to hurt you. It is just more of their difficulty with organization and location concepts. Place a large box in an out of the way corner and then unceremoniously dump any and all items found loose on the floor into that box. When someone is looking for lost items, mention the box and patiently repeat guidance on organization and safety. 
5. Be clear about personal space. Though it may be fashionable today to have a relaxed atmosphere around belongings and space, your time has better uses than searching for the scissors your family member or roommate put "right back" on your desk... two feet from where you keep them. Don't let this one slide. But as usual, exercise patience. It is genuinely difficult for sighted people to grop how exact they must be in returning things they have borrowed from you or moved while in your personal space. Generally it is good to enforce a rule that your things are not to be touched or moved at all. Have your own pair of scissors and all other handy household items. Then enforce a hard and fast rule that yours can only be borrowed in cases of emergency and then must be returned to your hands, rather than to the place the sighted individual believes is correct. 
6. Childcare deserves a couple of special notes. First off, it's clear that children can create a lot of clutter and chaos. This is their natural state. Get child locks on everything and put everything up high for as long as possible. Then as children get older, use the same principles applied to sighted adults with an extra dose of patience. Sighted children are actually more likely than sighted adults to fully adapt to your home and abide by the house rules, because if they are growing up with you, they are more likely to learn the same skills you do and accept them as normal.
7. On sharing childcare with a sighted adult: With small children safety is your top priority, but you've heard the phrase, "out of sight out of mind." Sighted people really mean it and especially when it comes to children. Some particularly annoying sighted people will question your ability to "watch" children and keep them safe from visible hazards. (Sarcasm and irony are much more helpful, not to mention legal, than aiming your fist at the place where their noise is coming from. But I digress.) Society and the media has trained them to believe that they, not you, are better equipped to keep children safe. Don't buy into this or your children may suffer from preventable accidents. Just because a sighted person is present, don't assume they are paying full attention. If you hear a match strike, batteries clatter or a chewing sound from a toddler who isn't supposed to be eating, always investigate. The child might well be hiding under the table or just around a corner and a sighted adult may not notice because they don't pay much attention to sounds. I can't tell you how many times I have relieved a child of choking hazards when sighted adults hadn't noticed, not to mention the three times I've pulled a drowning child out of water before sighted people reacted. The general rule is to keep alert at all times with small children.

I have written this with the hope of bringing awareness to the issues. I don't wish to give offense to anyone

There are many articles in the online and print media detailing what it is like to live with a family member with a disability. Some are meant to educate the general population and others offer necessary practical tips for families. I'm not against these articles. I do believe there are particular issues for people living with a person with a disability and good advice that can be exchanged with others with a similar living situation.

However, I couldn't resist telling how it is from the other side of the equation.

I wish you all luck and harmony in your homes.

Fear of need... or the problem with visible disabilities

It has recently become almost fashionable to talk about the issue of invisible disabilities.

Well, praise Gaia! Finally a fashion that is helpful!

Still I have recently received a bit of a shock to my view of the divide between invisible and visible disabilities. 

A little background... As long-term readers of this blog will probably recall, I started using a white cane regularly about ten years ago. I spent a lot of years before that "passing" for fully sighted, even though I'm clearly legally blind. Then in 2004, my husband and I moved to a small town outside Prague and I started teaching English and translating as a private business. I had to forge relationships in town and the invisibility of my disability presented a problem. 

Several people told me they were offended that I didn't greet them from across the road. Others mentioned that I didn't use eye contact and smiles to show who I knew in a group or that they initially assumed I was developmentally disabled (using other terminology, as you can imagine) due to the strange look of my eyes.

A picture of my actual famous scooter. Image by Arie Farnam

I started using a white cane because I thought it might help to clue people in to the real issue--that I simply can't see much. Soon I noticed quite a few benefits of the cane, even though it made me feel uncomfortable. People in stores were much more helpful when I asked a question and crossing streets stopped feeling so much like risking my life. 

In 2009, we brought home our first child and things changed dramatically. While I had used the cane a lot before, I now used it constantly. With a baby, I just couldn't take any amount of risk at intersections and it was around this time that a legally blind friend of mine was run over and nearly killed.

Still, somehow social relationships didn't improve over the long-term. The cane helped a bit with the social offense and confusion over the categorization of my disability, but not as much as you might imagine.

Soon the neighbors and acquaintances who initially seemed more willing to give directions or say "hello" retreated into guarded silence. I continued to say "hello" to everyone I met on the street. It's local custom in this country, but as the years passed the answers I got became gruffer and less friendly. Our circle of family friends narrowed to... mostly people with some sort of disability. I started to wonder if the cane was such a good gamble.

Fast-forward to 2016. My eldest child is nearly eight and the youngest is six. They are learning to cross roads safely. But more importantly, my bone and joint problems are acting up. I have always had crooked and funky bones in my legs and feet but compared to my eyes, it never seemed like a big priority. This year, however, with the kids attending two different schools and my husband in a higher pressure job than before, I have to do a lot of fetching and dropping off.

With soccer practice and my own teaching jobs in the mix, I can easily end up walking four or five miles on pavement every day. And neither my knees nor my feet can take it. I've always dealt with a fair amount of pain in my feet, but I never realized it wasn't "normal" for walking distances to be that uncomfortable. Now it is beyond "a fair amount" and worse than that it escalates day after day. My feet take more than a few days to heal from one five-mile day and these days five-mile days are every day.

The upshot of all this is that I ditched my cane this fall and I've been riding an electric scooter.

What? You go from blind to motorized without any actual change in your vision????

Essentially, yes. I was never carrying the cane for its ability to find walls... or even the thicker variety of lamp posts. I was carrying it for social cues and traffic safety. And I drive the scooter very slowly and only in areas that I know so well I could walk without a cane and with my eyes closed.

That said, I was pretty nervous when I first got the scooter. Neither my husband nor I could figure out how we were going to handle all the transportation of the kids this year with his job, so we decided that it was a necessity. But still I was sweating pretty heavily the first time I encountered people I know in town, riding on the scooter a day after having been downtown with my white cane.

Do you want to guess what happened? A wild flying guess?

Absolutely nothing. 

My acquaintances greeted me cheerfully. I did my errand and returned home.

The next day I went out again, still nervous but excited at my new ease of mobility. The electric scooter is a far cry from a wheelchair. It does not look like something only a disabled person would ride and it has a very small physical footprint. You can fit on narrow medieval sidewalks with it and in many of the same spaces where walkers go. I can't use a bike well alone in the same way simply because bikes are too big for our tiny sidewalks and riding in traffic isn't an option. Also bicycles require a certain minimum speed to be stable. This scooter can really crawl and still maintain balance.

Over the first few days, I started to wonder about the new cheery mood that seemed to have swept through our little, often grumpy town. People who usually greeted me before, now do so with gusto and many people who had not greeted me previously started returning my greetings. The elderly ladies I often encounter on the way to town who used to glare at me and mutter before, now greet me with a chorus of chiming voices. I had to wonder if someone in town was making hard cider from the fall apples (and if so, where I could get some).

Keep in mind that I can't see people's expressions from any reasonable distance, so I could not tell if the cheerfulness (or the previous grumpiness) had anything to do with me. But as the weeks have passed, I have been astounded by reactions to my scooter.

Despite my initial anxiety, not one person has accused me of "faking" my vision impairment. Not one person has complained to the local police about my scooter taking up space on the sidewalks. And three people have stopped me to ask where they can buy such a scooter--one woman running desperately for two blocks to hail me because she has also been developing joint problems and she said she felt her heart leap when she saw me glide serenely by--uphill no less. 

Several people have randomly commented on how nice the scooter looks and how helpful it is to me. When I apologize for taking up a particularly narrow sidewalk and scrunch to the side to let walkers pass I am often met with protestations that my scooter is "wonderful."

This has all been very pleasant and continues to be. But finally my husband got to the bottom of the change when he overheard someone saying how uncomfortable it made them to see me with a white cane. They felt helpless, not knowing how to help and yet they had a nagging feeling that they should somehow help "the blind lady." Now they see the scooter as having saved the day. No one seems to get that the scooter is not a guide machine of any kind.

They don't care. They suddenly don't see a person with a disability anymore and they feel better for it.

And that is a sobering thought for me.

I have lived much of my life straddling the line between a visible and an invisible disability. But there are many people who can never pass for non-disabled. I feel a bit like John Howard Griffin, the white journalist who went undercover as a black person in the Deep South of the United States in the 1950s. I get to experiment with seeing life from an isolated perspective and I get to return again to the "living." 

But what is it that causes people to react so intensely (and so negatively) to visible disabilities?

There is a fear that is innate to our human DNA--a fear of helplessness. We fear being the outcast or being the person in need. And to see a person we believe is outcast and in need brings that fear up, just under the surface.

Then too there is also the feeling that one probably should help someone who is in what the temporarily able-bodied often consider "a terrible condition," even if the assumption that a visible disability must be terrible is erroneous.  Obviously people with visible disabilities often don't need anyone's help just at the moment that you happen to see them on the street. They are just as likely to be routinely going about their business as anyone else. 

Most of the time I fit that description. 

I am glad to have discovered another technology that dispels some of the fear of physical differences. Still the core issue remains. A person's appearance is a very bad indicator of whether or not they need help. In this case it is better to listen than to look. People often ask for help and aren't heard. and others who never asked have help forced upon them (or are avoided out of fear) because of their appearance. 

Words for our times: Pass through fear and listen.