We finally bit the bullet and took that long awaited trip to Europe with our 25-year old son, Alex. The first reservations I made were round trip to Dublin for 12 days. Somewhere in the middle of a sleepless night I thought, “what am I doing?!” This was to be a once in a life-time experience for me, my husband, and Alex and it hardly seemed sensible to limit it to a one country excursion; what the hell, a 12-day trip to Dublin, London, and Amsterdam it would be!
Alex is a lot of things; I always hesitate when I try to explain or define him because he is not who he is “inspite” of anything or “because” of anything….he is, as we all are, a full and complicated human being with several identities. Alex is a young adult who accomplished his undergraduate studies at Rochester Institute of Technology, in Political Science with a minor in History, and a Master’s in Public Administration at American University…all along the way he achieved an excellent academic record, many honors, and has had several internships in Washington, DC and locally. He is an active participant in civil discourse and human rights advocacy. He has a sly and wonderful sense of humor and is what I call a “cool cat.” He is rarely remorseful or morose. He has a passion for history, museums, beautiful landscapes, supporting all people who find themselves marginalized or stigmatized, is a movie affectionado, and quite talented at taking pictures of the pets in his life. He wants to make the world a better place.
Alex also is a person with disabilities; he has congenital muscular dystrophy and uses a power wheelchair. He is completely non-ambulatory and requires moderate to maximal physical assistance. To live his life as he does, he requires several other supports such as a bi-pap machine, shower and toilet commodes, an emulsifier to grind his food, etc. He needs 24-7 coverage of personal care assistance when we aren’t around. Alex is also deaf….I mean Deaf (for those of you that don’t yet know the difference between the lower and upper case “D”, the latter means that he identifies culturally as a Deaf person). His native language is American Sign Language.
Alex has always been the E-ticket kid. For better or worse, he has always wanted to ride the roller coaster, drive the car, and take the risk. He was one of the youngest people to use a power wheelchair in his birth state of California. At 2 ½ years old he was assessed with excellent judgement; he has a good head on his shoulders. He has yearned to travel internationally for years.
Dublin, London, and Amsterdam in 12-days…crazy, right?! When I was asked to write about our recent experience, I knew immediately that I wouldn’t be sharing a list of what to do or who to contact or how to plan a trip when you travel with disabilities. All you have to do is one quick google search and you will get more information than you can possibly handle. For those of you who have travelled with people affected by disability (in a world that creates disability due to a lack of access) you will know that it’s all about the planning. OK, I lied, I think I will write a list:
- Details, details, details (you can’t plan enough)
- Know when to let go of the details (once you have the plan, you need to scrap it sometimes)
- Laugh at the mistakes; applaud the successes
- Have high expectations
- Have realistic goals
- Expect that your loved one has a right to access in all ways and with dignity
- Ask for help often and whenever needed
- Enjoy the smallest of discoveries
- Work as hard as possible to get out of the hotel room before noon
- CREATE RELATIONSHIPS
By far, creating relationships along the way is what my entire family has learned over the years. I advocate as hard as possible for equitable policy in all areas of my son’s life, we all do. But often, the most powerful way to make this life work is to talk to the people that can help. The flight attendant who needs to find a support for his feet during the trip, the food server who can ask the kitchen if they could grind the food, the guide that finds a ramp to get into that ancient church crypt, the bus driver who directs him to an accessible pub, the folks in the pub that want to move over and make room so that the three of us can all squeeze in and share our Guinness and stories. When I think back on that trip, I think of all the people that we met, even for only the briefest of moments. Then, I think of this wild ride and the precious memories and how fortunate we were to share this journey with each other.
Susan Sklaroff-Van Hook is the clinical coordinator and resource specialist at Jewish Family Service of the Lehigh Valley and adjunct faculty at Delaware Valley University.