Making it Work: Being Your Own Advocate

  Sometimes life isn't ideal. Let's face it, most of the time it isn't! So, we do what we need to, to make things work. In my "Making It Work" posts, I share life hacks and ideas that have helped me so that, maybe, they can help someone else too. I hope you enjoy!

 Today's culture would like to have you believe that there are supports and accessibility options aplenty all around us. Many people I've spoken with have the impression that if you're in a wheelchair you get to skip the line wherever you go - especially in Disney parks. People have seen allergy information on menus, so most think that allergy friendly food is offered at most restaurants. The bad news is that just isn't reality. Yes, there may be options available, but it isn't likely that anyone will offer them to you. Yes, you sometimes get to skip the line, but that's only if you know to ask. And no, most restaurants are not allergy friendly, and those that are usually only have a couple of limited options. So what's a girl to do? Learn to advocate for herself, that's what!

 Today, I am blessed to be writing to you from a cruise ship that is touring Glacier Bay National Park in Alaska. This ship has fourteen different restaurants, with additional snack stations around as well. With all of those options, how could someone go hungry? If they have a food allergy or intolerance and don't know how to navigate it, that's how! If you were to just show up to a restaurant on the ship, or a snack station, there might be one or two options available to you with your food restrictions, but then again, there may not. At home I can work around this quite easily, but when I'm at the mercy of a chef in a far away kitchen, what can I do? Your first and best tactic is to do your research in advance. On a cruise, like I'm on now, you should always register your food allergy at least 30 days in advance through the cruise line's special diet department. You can find links to this on their website. Then, one of your first tasks when you get on board is to talk with someone from the food department. Now that I'm pretty familiar with Norwegian Cruise Line (NCL) (I'm currently on my 13th cruise with them), I simply go to the place where they are taking restaurant reservations on the first day and check with them to make sure that my food allergy shows up on my account. They should also be able to tell you what you will need to do to make sure you have the best options available to you. On NCL this means pre-ordering the next day's food at dinner every day. That way the special diet kitchen can prepare whatever meal you are interested in with your particular requirements. If you don't do this, you'll be stuck with whatever is on the menu that already fits, which might not be much. In seasons of my life where I had more serious, restrictive allergies, I would meet with the cruise's dietician on the first day and make sure that all my needs were communicated. Then I would talk to them each day to plan my food for the next. The thing is, these people are not likely to hunt you down and try to help you - you have to stand up for yourself. You are the one responsible for making sure there is something available that you'd like to eat - not them. I've seen others going without when there could be plentiful options open to them because no one asked them. I, on the other hand, will sit in my chair at dinner until they bring me the menus for the next day, even if I have to ask over and over and over again. Trust me, eventually they'd like to free up the table for someone else! You have to be patient, and you have to be a little stubborn as well.

 When it comes to the wheelchair, again, you must be both prepared and tenacious. Look up the place you're going to in advance and see what accommodations are available. Do they have accessible transportation? Do you need to arrange for it in advance? With Disney, just showing up in a wheelchair will not win you many shortcuts - not like the old days. Now you have to have additional disabilities (primarily neurodivergence but some autonomic conditions are considered as well) and register with their Disability Access Services in advance of your trip. There isn't anywhere to register at the park. You'll have a video chat with a cast member who is trained to listen for certain key words to see if you qualify. If you do, they'll set you up and you can join one que at a time in the park virtually, but you still have to wait the same amount of time as those who get into a physical line, you can just do it from a restaurant or cool, shady spot. Another handy thing to have is a person walking with you that can survey the situation from a higher vantage point. They can help you to identify cut-outs and ramps, ways to get there from here that you may not be able to see from your chair. Finally, as my husband reminds me, it is helpful to slow down and ask. Yes, I could just buzz through following the signs, or I could stop and ask a staff member where they would like me to go with a wheelchair. More often than not, this will net you a short cut!

 Many, if not most, of the places you visit have put together some intentional plans to accommodate people with disabilities and special needs. They may have provided motorized carts or created alternate routes that avoid stairs and other obstacles. They may have created an entire, specialized kitchen just for those with allergies to avoid cross contamination. They may even have transportation options, like a shuttle with a wheelchair lift, available. They are just not very likely to tell you about it, at least not in a way or a place or a time when you will see it unless you are looking. So...

Here's the Thing: Don't expect someone to reach out to you and figure out what help you need. You have to be your own advocate! Do you need to bring medication that requires refrigeration? Do your research and find out what the TSA or Cruise Line's rules are around this. Don't assume your hotel room will have a fridge, call and make sure of it. Do you have a specific food allergy? Mobility limitation? Sensory issue? Know your limits, know your needs, and politely work with the places you will visit to accommodate them. Be patient but be persistent. Oftentimes the front-line workers you initially encounter have no understanding of their ADA policies and accommodations and will just tell you that it isn't available, but if you have done your research and know it's there, you can ask for further help or ask for the exact program you've read about online. And you'll make it a lot farther if you take notes. Write down the name of the person you spoke with and use it with them to make sure they know you know it ("Thank you, Susan, for your help, but can I please speak with your supervisor?"). If you find out about a specific program, write down the name of it and any requirements (like talking to a chef or a Customer Relations Officer (CRO)) to using it. If applicable, ask if you have a case number and write it down. This can save you a lot of repeat work and jump you ahead in the process if you need to call for support again.