Q&A with Savannah L. Breakstone,autism advocate

I usually go to do advocacy work or for training or conference. Most of my in-state travels right now are with a group called Self-Advocates United as 1 (SAU1), which is a PA based disability group that focuses on Developmental Disabilities. I go to Harrisburg, do training for other self-advocates across the state (including in the state centers), and attend meetings or training. Every couple of months I go to Washington D.C. for related advocacy purposes, and I stay with friends.

I also get invited to conferences and training across the country from time to time. Because of my financial situation, I don’t have the money to travel to things that aren’t paid for by someone else or by fundraising. I’ve gotten to go to Chicago, Denver, Seattle, Kansas City, and Oregon in the past couple of years. This week.I’m  leaving tonight for Dallas, TX, followed by Amherst, MA. On the Seattle trip, I stayed extra time because of being able to stay with some friends after the summit was over. Because I normally don’t have much time that isn’t used by whatever brings me to a place, it is nice when I go someplace where I can spend a few extra days if there is someone I trust in the area.

 How do you prepare for your trip?

I used to be more detailed with my packing regimen. I had a structured order. Today, though, I’ve traveled enough, so I have a looser order. I have a list of what I will need, and at this point, I have a version of those things that are ‘stored ‘ in my bags. Some events might also offer packing lists. If you aren’t sure what to bring, and there is an event organizer, ask what the weather is like, and if there are any needs, you might not anticipate. Since most of my travel arrangements are made by third parties, I  don’t need to manage my travel budget right now. When another person is setting things up, they will need to know the logistics of the events are and coordinate your flight schedule accordingly. They’ll deal with the details of using your correct name as it appears on your approved photo ID, your date of birth or any additional needs you might have. You should let people know in advance if you require further accommodations  Depending on your method of travel; there are different types of things that they can do to help you have a more accessible trip. [caption id="attachment_13002" align="aligncenter" width="640"] Photo credit S. Logsdon-Breakstone[/caption] You should also keep your needs in mind to determine what type of transportation you should use. In the past, I  used to be able to travel any which way, but I now diagnosed with fibromyalgia which makes taking certain types of transportation very painful, especially if I can’t move around or have space to stretch. Also, I also suffer from car sickness, which means buses aren’t an option for me. When I can, I get a low scent or “allergy friendly” hotel room, but that is not always an option in budget friendly hotels. Though this isn’t a big deal for me, I do know that for some people this can make the difference between a meaningful participation in the day’s schedule or sitting in your room for most of the trip. I  wish more people would avoid heavily scented products when they are travelling, especially on public transportation like planes and trains. Sensory over-stimulation or extreme allergies, people usually have a good reason to request a ‘scent-free’ environment.   When I travel, I like to look up the layouts of the airport, hotels, and other venues so that I avoid unexpected difficulties. I also work with event organizers or people sponsoring me to make sure I understand where my ground transportation is and how that process works. Don’t be afraid to ask the people who work for the airlines or trains for help if you need it. I learnt for example that those wearing red caps at Amtrak are there to assist passengers who need assistance.You may or may not have to disclose that you have a disability, but you shouldn’t need to specify beyond what is directly relevant. (Examples: “I have a condition that makes crowded areas very disorienting, so I need help” or “I have a condition that makes long-term movement difficult. What sort of help is available?” Check and make sure a station or shuttle is accessible for you before booking through there. Even though Amtrak is supposed to be wheelchair accessible, many stations still aren’t updated, especially in rural areas. Also, if you or someone you are travelling with uses a wheelchair, don’t assume that because something meets ADA standards, it will be accessible- ask or have someone help you ask specific questions. It can suck to get someplace only to find that your room isn’t convenient for you!  

How stressful are airports and security checks for you?

TSA is… Well, I dislike the crowded and the loud part. But the biggest issue with TSA for me tends to be when I travel through a TSA  checkpoint I haven’t been to before. I’m OK with the airport I usually fly out of. I haven’t been through Dallas’s yet, so that makes me nervous. The bigger the airport, the more complicated it seems. Make sure you follow the packing guidelines that are posted on the TSA website, have a contact person in mind if there are complications, and try to keep calm. I haven’t been pulled out for more than a pat down when they couldn’t figure out what was causing the metal detector to sound  because I had long skirts or was covering my hair for religious reasons at the time. They end up having someone wand you, and have you move your loose clothing around so they can tell if you are smuggling contraband. When I covered my hair, they would pat down my hair and scarf or peak under it. Some places are more respectful than others. If you DO have a negative TSA experience, write down all the details as soon as possible. There is a place on the national TSA website to turn to report any harassment mismanagement or discriminatory treatment at a particular location. If they don’t get significant reports, they don’t know that there is a problem. Some populations will have additional issues, statistically, with TSA than others. It is a good idea to look up tips from others with similar demographics to get a sense of what to expect, and what/if there’s something you want to do to make it easier. [caption id="attachment_13010" align="aligncenter" width="600"] Photo credit S.Logsdon-Breakston[/caption]

I usually travel for advocacy events, so I end up spending a lot of time at the conference or other activities that I came for, and rarely have time to do additional travel. When I do have extra time, it depends on. if the trip falls on a Saturday, I might check whether there is a synagogue I can visit. I always try to find foods that I might not have access to, back home that are still within my dietary needs and restrictions. Comic book stores are another place I look for when I have downtime.   I’ll also look up if there is a Foursquare badge for a city and what I’ll need to visit to get it. I use Foursquare to keep track of when and where I’ve been, as my sense of time isn’t very good. For someone like me, it also helps me avoid staying in a room by myself. Even when there isn’t a badge, Foursquare can offer you suggestions for things you might like based on your user history. When I traveled to New Orleans, I even went to a Jazz bar, though it was deafening. I enjoyed getting a chance to see such many interesting things and beautiful buildings. When I’m overstimulated, though, my auditory processing is not as good and speaking is harder. I had my netbook with me, and I shared a hotel room with a friend and fellow advocate. She is Deaf, so our access needs kind of met up fairly well for that trip!

If you had the ability where would you travel to?

I  do have a list of states I haven’t had the opportunity to visit yet. High on the list are California- and Florida which might happen this summer if I can raise the funds for me to attend the Society for Disability Studies conference this summer! If I had money for fun travel, I’d also like to attend Vidcon in CA, but I don’t see that happening. Obviously, Hawaii is also on my bucket list, but it’s a lot less likely to get a trip there than somewhere in the continental US.

I’d like to visit Israel someday, of course, as well as spend some time in England. One of my grandfathers was born in England and came to the US when he was just a boy. I have family there as well as in Spain. My family is vital to me. I also like history and architecture so touring places like Japan would appeal to me. Hopefully someday since at this point, money makes international travel unlikely.

  Savannah Logsdon-Breakstone is an adult with multiple disabilities, including anxiety disorders, fibromyalgia, and hypermobility and autism.Savannah lives in rural northwestern Pennsylvania; manages social media for national disability non-profits, consults on policy at the state and national levels, and works as an advocate for both autism and cross-disability groups. She is actively involved with ASAN, SAU1, and other organizations focusing on disability issues. She writes for multiple blogs, including Persephone Magazine, as well as her advocacy blog, Cracked Mirror in Shalott. Savannah has had essays and poetry published in anthologies such as Loud Hands and Perspectives 2.