By Stephen Lanzi, NCHPAD Communications Specialist
For many people, a trip out in public can feel routine. They set out to complete the journey without necessarily thinking of what they may encounter. For people with invisible disabilities, though, the uncertainty of challenges along the way can feel daunting.
I’ve personally felt this as someone who is low vision, but doesn’t typically present as blind to people who don’t know me. I may need assistance when shopping at a grocery store or using the bus, but the thought of asking for help from someone who doesn’t know me and isn’t familiar with my condition has led to plenty of anxiety since my condition’s onset.
For this reason, I’ve had the intrusive thought that navigating public spaces may be easier if I wrote “blind” on my forehead, so that a stranger would understand if I was asking for help.
Of course, this is an irrational idea. People with identifiable, or visible, disabilities, such as a wheelchair user, can receive unwanted attention or be given unnecessary assistance when at a restaurant or moving through an airport. This is partly why I hesitate to use a cane in public spaces.
Regardless of disability or how visible it may be, the challenge isn’t knowing that you need help. It’s figuring out how to ask for it.
Although my personal disability journey required a bit of growth in the self-advocacy department, once I came to believe that no one truly operates independently of the rest of the world and became comfortable asking others for help, an uncomfortable question presented itself that I have to answer in nearly every public outing I make.
How much do I need to explain?
Many questions naturally follow from this, depending on the setting and context of the situation, such as “Do I need to explain my condition? Will they believe me?” But they all come back to the overarching answer: you can ask for what you need without explaining everything about yourself.
Below are some tips and important points I’ve learned over the years while growing more comfortable navigating public spaces.
Start With What You Need
Likely the most useful guiding principle I’ve found when navigating public spaces with an invisible disability is that you just need to explain what you need help with, not why you need assistance.
Requests for assistance can be straight to the point and not involve any medical explanation, such as:
“Could you help me find the accessible entrance?”
“Would you mind reading that sign for me?”
“Could you point me toward somewhere I can sit?”
“Could you give me a little more time?”
These phrases get to the heart of why you may be asking an employee, or even a stranger, for information, rather than opening up a conversation for a back-and-forth.
There may be instances when disclosing a bit of personal information may make logistical sense, but you don’t have to disclose anything for basic information.
You Decide How Much You Want to Disclose
You may anticipate asking someone who is unsure or curious why you may be asking for assistance, or even question if you truly need assistance. This can be an uncomfortable reality, but remember, you don’t owe anyone your medical history.
So much of life can feel like trying to prove something is there that others can’t see, but this battle doesn’t have to be brought into a quick interaction in public.
There are times, though, you may feel it is useful to give someone a reason for their own justification, and in those instances, the level of disclosure may depend on the situation and your comfort level.
You might say, “I have a disability and I was hoping for a little assistance.” Or for a bit more of disclosure without getting into condition-specific details: “I have a condition that affects my balance, so I need to hold onto something while I’m walking.”
You may opt not to discuss any of the reasoning, but the important thing to remember is disclosure comes on your terms. There isn’t one universal way to handle a request.
Have a Few Phrases Ready
I’ve personally found that having a few simple phrases ready makes asking for help much smoother, so that I don’t have to come up with the words on the spot. Phrases like:
“I’m having trouble processing that. Could you say it again a little more slowly?”
“I’m having difficulty finding my way. Could you point me in the right direction?”
“I need to sit for a few minutes. Is there somewhere nearby I can do that?”
If someone asks for a reason that you don’t want to share, it could be the phrase:
“I’d rather not get into the details, but I appreciate your help.”
Sometimes, though, a generic, yet direct, phrase can do the job:
“I have a disability that people can’t typically see. Can you help me with this?”
You don’t have to have a phrase that fits perfectly into every situation. You just need to be able to easily communicate what would make the situation more accessible for you.
When Someone Doesn’t Believe You
One of the most difficult aspects of having an invisible disability in public life, or private life for that matter, is having someone assume that because they can’t see your disability, then you don’t need assistance or accommodation.
That can be extremely frustrating, especially when the need for assistance already exists.
It’s important to remember that you don’t have to legitimize yourself to every stranger you interact with. You can always approach someone else or ask to be pointed in the direction of an employee or help desk.
If someone questions you or your disability, you can redirect the conversation back to what you are looking for: “I’m sorry, I am just looking for assistance with…”
The goal is to get through the situation calmly and without debate about you or your disability.
It’s Also Okay to Say No to Assistance
Navigating public spaces with an invisible disability doesn’t mean you always need assistance. You may have the tools or ability to act with autonomy in the manner that suits you.
If someone tries to provide unnecessary or unwanted assistance, it’s okay to say, “Thank you, but I’m alright,” or “I appreciate you asking, but I just need a minute.”
If you do want the unprompted assistance, that’s okay, too. The point is assistance comes on your terms and with your autonomy.
If Someone Asks You for Help
For those of you who don’t have an invisible disability, there are a few things to remember when interacting with someone with an invisible disability.
Most importantly: listen to what the person is actually asking for.
If someone asks you to point them toward an entrance, point them toward the entrance. You don’t necessarily need to know why, and you don’t need to provide assistance they didn’t ask for.
It’s okay to be curious without being nosy or asking for personal information. It’s also natural to ask if they would like assistance with anything else.
But if someone doesn’t want help or doesn’t want to disclose anything, respect their answer.
Always remember that just because you can’t see the disability doesn’t mean it isn’t there.
The next time you encounter someone who asks for assistance, you may not know why they need it. You may not be able to see their disability, but you don’t necessarily need to.
You can simply ask: “How can I help?”
Public Spaces Should Be Used by All of the Public
People of all abilities should feel comfortable accessing public spaces in a way that meets their needs and abilities. For me, this doesn’t mean acting independently. I believe everyone depends on others. People with perfect vision still depend on others to hang signs that point them in the direction of a departure gate or bathroom.
We all just aim to be able to navigate public spaces with autonomy.
For me, this doesn’t mean avoiding asking for assistance in public spaces. It means knowing how to comfortably ask for assistance while preserving my autonomy.
Sometimes it means asking a stranger a simple question. Sometimes it means disclosing a bit. And sometimes it means setting a boundary with someone who wants to know more.
All those choices are valid. And with an approach in mind, you should grow more confident accessing public spaces with the assistance and disclosure level of your comfort.
