Traveling with a disability: Save yourself spoons and money!

Traveling in any way can be a relatively large expense, and for those of us with disabilities, it can also take up a disproportionate amount of energy.

There are some things you can do now to help you have an easier time when you travel later, whether you’re traveling across town or across the country.

Always plan ahead

This may sound simple, but we often need to think and plan ahead a bit more than the average person—and the details of just what we need to plan for will vary based on our conditions.

I have a stress-responsive movement disorder (Functional Neurological Disorder), which means that whenever I am feeling stress (including positive stress, like excitement) I am more likely to have symptoms—which in my case are primarily muscle jerks or movements.

It can be as small as my wrists shaking and as large as my whole body rocking back and forth so violently that I slam my head into the seat in front of me or bruise my back from slamming so hard into my seat.

The more in control I feel, the less likely I am to have symptoms—which means that the better grip I have on my needs and how they’ll be met, the less likely I am to have symptoms.

When I travel by myself (which I did frequently pre-Covid and hope to pick up on again soon), I make sure that I have a solid plan in place.

This includes knowing what route I’m using, where I’m transferring (if I need to), how much (and how) I’m paying for each step, and what I’ll do if the transportation fails or is late.

I also usually pack my bag the night before so I’m sure I don’t forget anything I’ll need.

I generally make sure that I could pay for an alternative means of transportation (like a cab) if I really needed to, or that I have a friend or family member who could pick me up in an emergency.

For longer or more demanding trips, I also have mental plans for handling the most likely things to go wrong—as well as calling ahead to ensure I have the protections I need.

Get a reduced-fare card for public transportation

Most transit systems have some form of reduced-fare program for people with disabilities (they are often bundled as a senior/disabled discount). 

You may need to dig a bit to find out what you need to give them as proof that you are eligible for the reduced fare.

Since these reduced rates are often close to half off, it’s generally well worth exploring!

There will usually be information somewhere on the organization’s website—just keep poking around in there until you see a reference to disability/reduced-fare programs.  

Many will accept proof that you are collecting SSI or SSDI as proof of eligibility. 

If you are not on these programs (or are not yet), often there are other ways as well, such as you and your doctor filing the appropriate paperwork.

In many cases, you may not even need to apply for an ID specifically for the program; you can simply show your Medicare or Medicaid card if asked. 

You do want to check your area’s rules, though, as each city or county or state may have its own set of rules regarding proof of eligibility.  

To give you an idea of the variety of ID forms you may get, the MTA card is a permanent card with a photo ID on it, about equivalent to a monthly MetroCard that many New Yorkers carry. 

NJ Transit, on the other hand, prints out these little paper ID cards that are supposed to be good for 3–4 years, but they easily fade or tear. 

I carried a NJ Transit card for years and never showed it to anybody. They were perfectly happy to see my MTA card or my Medicare card. 

The MTA card was a different matter, as it was loaded with fare money—if I didn’t have my MTA card with me, I either paid full fare or had to talk to an attendant each time I was going into the station, pay full fare, and get a round-trip disability card. 

If nobody was on duty (which happens somewhat often, especially at the less-traveled stations or off-peak times), I wasn’t going to get my discounted ride.  

Wherever you live, if you are going to use public transit regularly, it’s well worth it to get some form of reduced fare.

Also, if you are planning a longer trip, it may be worth investigating your reduced-fare options at your destination.

Get a disability placard if you travel by car

This is what allows you to park in the blue accessible parking spots that are legally required to be in most parking lots.

These placards are available for people who have mobility or more extreme energy or pain issues. They are controlled by your state’s Department of Motor Vehicles.

They require a doctor to fill out the form, and these placards can be good for several years.

These placards can save you spoons because you are almost guaranteed parking wherever you go and that your spot will be as close as possible to your destination.

Al and I have both had these placards at different times—I had a period where my FND symptoms were so severe that I couldn’t reliably use stairs, and I was often walking with a pronounced limp or other gait issues.

My neurologist signed off on my placard, and that gave us the option to use the accessible parking as needed.

It took a load off my mind.

When Al shattered his acetabulum, we used my placard until it expired, then he got his own, as walking was painful and he needed to move slowly.

I highly recommend seeing if you are eligible, even if you don’t own a car. You can bring it with you whenever you travel with somebody and use it then to park closer to your destination.

In New Jersey, the blue placard came with a printout ID that needs to be kept either in the car or with the person who has the disability.

That printout is very flimsy, basically just a piece of paper.

Aspects of this may be slightly different in different states, but I’d be surprised if your state’s program didn’t operate under similar principles.

Seeing your doctor about transportation assistance

If you are not currently on a state or federal assistance program for your disability, you likely will need some form of doctor’s statement about your condition. 

Generally doctors are good about filling these out, though some may consider that the sole focus for the appointment. 

Usually, the programs don’t insist on a particular type of doctor signing it, so you can go to whichever doctor makes the most sense for you (or whoever you are seeing next). 

Just be sure you print out your program’s specific form ahead of time, and read it over before you bring it to your doctor. 

Be prepared for the possibility of the program rejecting your application the first time around. 

Al and I found the programs to be sticklers about things, and if they can find an excuse to reject your application, they might. 

Usually, they’ll send it back with the problem areas highlighted, and then you will need to go back over and put in all the corrections they requested. 

After he shattered his acetabulum, Al applied for an NJ Transit reduced-fare card, one for the MTA (New York City’s subway and bus service), and for a placard for our car. 

Each of those applications was sent back covered in highlights, mostly over things that the doctor’s office hadn’t quite filled out correctly. 

The second time was the charm, though, and after we sent them back, he was given all three things.  

Also, if you have a condition that is easily misinterpreted by people or is often dismissed, you may want to get a letter from your doctor stating accommodations you need or reinforcing the reality of your condition.

I spent a few years after my FND diagnosis carrying a letter from my neurologist stating that I did not have a seizure disorder and did not need emergency medical care.

It helped me because when I got symptomatic, people often wouldn’t listen to me—and there were multiple times when people reacted poorly to my being symptomatic.

Make sure you are covered by car insurance

This one may sound a little weird, but bear with me.

In no-fault states, the person who is injured in a car accident is cared for by their own insurance.

Their insurance company has the responsibility of getting reimbursed by the responsible party for the accident if the person they insure isn’t the cause of the accident.

Car insurance covers you whenever a vehicle is involved, including a pedestrian being hit by a car and other such circumstances.

So even if you aren’t driving, if your household has a car, it makes sense for you to be listed on the insurance. One relatively easy way to do this is if you are the car’s owner, even if another person is doing the driving.

Both (or all) of your names are then on the insurance so that if anything should happen to you that involves a motor vehicle, you’ll get all the insurance benefits and supports that you need.

Al and I have set this up—initially unintentionally (as he was driving my car), but since then, we’ve made certain that I’m the owner and he’s the driver so that we both are fully protected.

Notify your airline and airport that you have a disability

I plan to do a post specifically about flying with a disability, since there can be a lot that goes into that planning.

However, I do want to mention that while there is no disability discount, there are a few things that can often be done to help mitigate your stress when it comes to flying.

Most flights have courtesy boarding, where people with disabilities can often board earlier than others.

Generally, full-time wheelchair users are the first to board (and the last to deplane), which has both advantages and disadvantages.

Most airports and/or airlines also have wheelchair assistance, so if you have stress, pain, or mobility issues that will be helped by using a wheelchair (especially if you wouldn’t ordinarily use one), this is well worth taking advantage of.

When you arrive at the airport, go to customer assistance and request a wheelchair.

Generally, somebody on staff will be pushing you around (be warned that some of them may expect to be tipped for the service), and very often they can get you through the security checkpoint with a little more ease than you would otherwise.

Also, when you book your ticket, you can note that you have a disability and request a wheelchair to meet you at your gate.

You also can often make a request at the gate for a seating change if you couldn’t get the ideal seating when you reserved your ticket.

In my case, I’ve learned that sitting in the bulkhead seating gives me more legroom and headroom if I start slamming around violently.

Sitting there instead of regular seating greatly reduces my odds of hitting my head against the seat in front of me, which makes everybody happier!

When I fly, I try to reserve a bulkhead seat, but if they are taken, I mention the issue at the gate and sometimes they are able to switch my seat.

The final thing I’ll mention here is that if you have a sometimes-invisible condition or a condition that could worry fellow passengers, grab a flight attendant’s attention when you board and give them a heads-up so that they are less likely to have a bad reaction if something happens.

In my case, people have mistaken my movements for seizures, so I always warn the flight attendant that I have a stress-responsive movement disorder and can communicate during it.

This way, if they see me rocking, they can quietly check in with me rather than freaking out about my “seizure.”

Also, if other passengers have issues or concerns, the flight attendant can handle it, rather than me having to explain everything and likely having my symptoms increase.

You can travel with a disability

Whether you are managing a mental illness or a physical condition or anything in between, you can likely travel on some form of public transportation.

This world was developed primarily by abled men for abled men, but that doesn’t mean that we can’t make our way through it.

By planning ahead, we can reduce our potential anxiety and ensure that we can use each part of the system each step of the way—and have a backup plan in case things don’t work out the way we’d hoped.

Reduced-fare cards are often available for bus, train, light rail, or subway, but may have different rules or limitations and may have different ways to prove eligibility. It’s often well worth the effort to get them, but it may initially take some poking around on your provider’s website.

If you often travel by car, it also may be well worth your effort to get a placard that allows you to use the accessible parking spots. Even if you don’t drive, you have the right to use them as a passenger as well—and they can save you a lot of effort and energy every time you use a car.

You may need to set up an appointment with your doctor to put in these applications, especially if you aren’t on SSI or SSDI. You absolutely still can do so as long as your doctor is willing to argue your need.

Especially if you live in a no-fault state, you also may want to ensure that you are covered by car insurance, even if you don’t drive. This can help protect you if you are injured as a pedestrian or a passenger.

Finally, if you are going to fly, you can get some supports by calling ahead and identifying yourself as disabled. While you won’t get a discounted rate, you may be able to ride in a wheelchair instead of having to walk, board the plane early, or possibly be able to adjust your seating if needed.

All of these are attempts to make the relatively inaccessible more accessible, and as such are much more of a right than anything else.

You deserve to get these supports, but generally will only get them if you ask for them. So please do!