Dear Helpful Soul

Dear helpful soul,

I realize that when you see me at a street crossing, you want to take my arm, tell me it is clear to cross, or even help me to cross the street. Your kindness, while well meaning, is not appreciated. I’ll explain why this isn’t helpful, or needed.

I’ve been living with disability my entire life. For many within the disabled community, this has been our situation. For some who are disabled because of illness or injury, this is not the situation. Their journey into disability might be more traumatic. They may slowly lose function in an area of their body, wake up one morning to the horror of lost capacity, or find themselves in a hospital bed with a missing limb. Many of us, if not all of us, within the disabled community deal with trauma surrounding the disability, and some must cope with ongoing trauma due to a gradual loss of even more function. Imagine someone with Usher Syndrome, who faces this on a daily basis. When sight or hearing can disappear, or you watch as you see less each day, or can’t tell what is gone until there is a radical difference, it is traumatizing.

Trauma may look different for the disabled. Please, ask and listen to understand. Someone may seem to be reacting abnormally when it is normal for their circumstances. When someone lives with ongoing events that are traumatic, and treatment for the trauma doesn’t completely solve the problem, cut them some slack. They may need it.

In most of the above situations, the journey of learning to live again may take a person to a rehab center. My journey into a rehab center began with the realization that I’d lost more vision and couldn’t see as I once had been able to see. I was down to twelve percent of my vision. For me, rehab was about learning better ways of doing things, using less of my vision, and confronting myself in a new way. I’d spent most of my life trying to fit into mainstream when I didn’t fit into a mainstreamed situation. I had to come to an understanding that now, more than ever, I had to embrace new ways of doing most things. When I think of leaving my home without my cane, I cringe and know I’m not safe without it.

Why do I need a cane? At first, I thought the need for the white cane was to enable me to navigate tricky spaces. I understood that I needed the help at night, but why did I need it in daylight? The longer I used the cane, the more I became aware of a few things. The cane let me sense areas to stay away from, such as sand or gravel. Both sand and gravel do not allow me to feel what I need to feel underfoot. I need to avoid both sand and gravel because I could slip and fall. The same scenario goes for ice and snow.

The cane also serves as a warning to others that I’m not going to see you clearly. I may not see you at all because you are out of my field of vision. People need to be prepared to take evasive action to get out of my way! This brings me to my first gripe: anyone on their phone and not tuned into their environment. Do you want me to collide with you? No, you don’t. Prevent this by walking with 100 percent of your attention on the task of navigating the space you are presently in. Having had several close calls with people who have been inattentive to their environments, I know it would be appreciated by so many. We don’t want to injure you or become injured by you. While you may not be driving, you are navigating spaces, some of which are very crowded. Please look out for oncoming people because if you don’t, someone might say something like “Watch where you’re going!” to you. They’re correct in saying this to you! Your phone can wait, and if it can’t, then move to a safe space to focus on what you need to do.

If you feel I’m being harsh, I’m attempting to protect myself in an environment that isn’t always friendly to me because I can’t see everything.   

Offering Assistance

Here’s some handy advice on assisting those with visual disabilities. You’re at a street crossing where there is no signal. You can see that the traffic is nonstop (the visually impaired person may be using their hearing to know when to cross). You also see that there are gaps that would be difficult for the disabled person, even though you could make it to the other side rapidly. You could make the offer of assistance in this way: “Wow, this traffic isn’t going to slow to let you cross easily. Would it be helpful to you if I assisted you to make a faster crossing to where we need to get?” If they say yes to this question, ask them how they want you to walk with them. This approach places the disabled person in the position of accepting or declining, and it comes with a reason for the offer. It is good help that may be very much accepted and causes us to accept the offer because it isn’t a rescue, allowing us to remain dignified—and that is a win for everyone! If we’re at a signal with a walk feature, we don’t need your help.

Speech and Hearing

Imagine not being able to hear clearly. When you can’t hear clearly enough to distinguish a D from a T or and S from an F, or other consonants and vowels, the life of a hearing-impaired person becomes stressful. 

Imagine trying to spell words that you can’t hear properly. Imagine not being able to pronounce those words properly. Add the challenge of uncertainty when you’re not sure if the word you heard spoken was “who” or “shoe.” The conversation becomes draining, confusing, and if you’re in a crowded room, it can become difficult. Social situations can become a challenge. For those with a hearing loss, the issue may be about isolating as best one can. 

While at the rehab center, those who dealt with the added hearing loss gave voice to the difficulty of hearing in the crowded dining area. I spoke with staff about not being able to enjoy the mealtime, and the need to engage in conversation at the table. No one had spoken up about this issue before. I was asked for solutions. First, I was isolated. That didn’t work. I didn’t want to eat alone. The next step was to ask others in this situation if they were experiencing this. “Yes, I am!” This was the common response. The next step was to reserve a table for us. This table was on the edge of the dining area. Nope, that didn’t work. Then they put us on the other side of the space. They were hoping the distance would solve the problem. Distance didn’t work as the noise trickled into our space, and it was difficult to filter it out. When I left, they were still working on the situation.

I’m faced with the fact that I need to semi-isolate in social situations or avoid them altogether. I’ve tried it both ways, and enclosed social situations with heavy noise levels are a pass for me.

I’ve been in The Netherlands for over twenty years now. I’ve tried to learn to speak and hear Dutch. It has been a challenge to learn a second language with a hearing loss. For the most part I try my best to converse in Dutch, and for the most part people are polite. Then there are the ones that judge and condemn. I’m told it is my fault that I can’t speak this language fluently at this point in my residency. The people who respond to me negatively are few in number, and to them all I can say is that given my situation, I do my best. Don’t judge until you understand that hearing is my challenge.

So, helpful soul, please listen for understanding. Understand that I know what I need, and above all treat me, and my disabled brothers and sisters, with respect. We’re having to face this every time we step out of our front doors. Cut us some slack, please.