After adjusting to the culture shock of arriving in another country where everyone is driving on the “wrong” side of the road, I came to realize that this new land is beautiful but flawed. There are very few crosswalks in which pedestrians must run in and out of traffic at their own discretion, often putting themselves in a situation where they have to run out of the way to avoid being hit. If crossing the street is dangerous for a person without a physical disability, I can only imagine the dangers that are involved for a person using a wheelchair or other support; Not only must they make sure the timing is just right so that they have enough time to cross the road, but this also requires enduring rugged terrain such as cobblestones which are not ideal for maneuvering a wheelchair. I believe that there should be more crosswalks so that all people- particularly those that use wheelchairs, canes, etc. have less hassle crossing the road.

I have also noticed that there is a lack of accessibility in some of the buildings in Glasgow. It seems that almost every building back home that has more than one floor has an elevator. I have found that same accessibility to be lacking here. I have also seen public “toilets” that were so small there is no way a wheelchair could fit inside. Even if this sort of bathroom is grandfathered in an alternative should be supplied for persons that utilize wheelchairs.

I am thrilled to be able to document my experiences in Scotland and expanding my knowledge on global disability! My first weekend in Scotland was a new and exciting introduction to the UK. On Saturday, we arrived in Glasgow , toured the University of Glasgow, and had a snazzy dinner at a restaurant in town. We ate our meals in nervous excitement for the weeks ahead.

On Sunday, we attended the Highland Games two train rides away from the city. Interestingly, while we were passing through the ScotRail train stations, I found that there were instructions posted for disabled persons traveling via train as well as a plethora of  accessible toilets. Particularly, the accessible toilet signs had messages next to them, reminding readers that “not all disabilities are visible”. I thought these were excellent ways to promote an inclusive and understanding environment for disabled persons. Additionally, while passing through a neighborhood towards the Highland Games and walking through the city, we passed by a multitude of houses and buildings (respectively) that had ramps attached to them. This showed that accessibility was clearly being worked on in these areas of Scotland. I don’t believe that I have seen as many accessibility ramps in the US as I have in Scotland!

My inclinations that Scotland was ahead of the curve (compared to the US, at least) regarding accessibility for disabled persons were confirmed on Monday, when we had our first site visit to the Glasgow Center for Inclusive Living (GCIL). There, we learned about how GCIL was helping disabled persons with housing and independent living. There was a small number of pamphlets and books on the tables while the presentations were being done and one of them that I found most interesting was the one in which they went through all parts of a typical house and the adjustments that could or should be made to the house to allow living at home to be an easier and more independent experience for a disabled person. Flipping through, I found adjustments and additions to a typical home structure that I hadn’t thought of before and it really broadened my previous knowledge of independent living. Overall, my experience in the first few days primed me for the IASSID conference to come the following days!

I had a vague background in many of the topics at IASSIDD, due to the previous DDHS classes and my experience working with children and adults with intellectual and developmental disabilities. For example, much of our DDHS classes have focused on the quality of life for the individual and for their family. This provided a nice wealth of knowledge, so that this week when we were hearing about the quality of life for people living in other countries, such as Zimbabwe, Switzerland, and the UK, we were able to make those comparisons in our minds, while absorbing and taking in new perspectives from around the globe.
One topic that I didn’t have any prior knowledge about, however, was the role of euthanasia in the lives of people with intellectual and developmental disabilities. Most of the conversations were led by professors from the Netherlands, whom I believe are the world-wide leading pioneers in this medical procedure. I appreciated the lengthy explanation, provisions, and case studies that were thoroughly presented to introduce this controversial and fascinating topic. The first discussion I saw in which euthanasia was briefly mentioned was on the first day, during a talk about quality of life. The speaker’s time had abruptly timed out after the inflammatory suggestion, which left the audience uneasy. Fast forward to the second discussion I saw, a day or so later, that had been dedicated to the topic of euthanasia specifically. Except this time, abortion was included and used as a comparison point of how far legal freedoms extend for certain groups and exclude others. This made me really stop in my tracks — a topic so polarized and controversial, yet one that I was adamantly sure I had made my mind up about. The topic of euthanasia was turning my world upside down. I let myself process this new information, and I still am very unsure how I feel about it now.
Fast forward to a heated round table on the last day of IASSIDD where someone brought up the interesting point of the language that was being used to describe this incredibly complicated process. Although this had been an on-going topic over the last few days (and for the last few centuries), with the same jargon being used, it was on the last day that someone aired their concerns. And immediately after the comment, people were very receptive and some even agreed with her. Although it seemed miniscule in the moment, that is exactly how change happens. And from now on, everyone in that room, whether they agreed with her or not, will think about the words they use to describe euthanasia, and some may even change the way they talk about it. **plug the person-first language movement**
It was an especially powerful moment for me and it made me feel even more grateful to have been a part of the progressive conversation and congress as a whole.

Last comment:
During the euthanasia discussion, someone said “legislators shouldn’t shop in the bedrooms of the public”, referring to how private affairs and things that will affect peoples’ personal lives should stay private. I thought it was very powerful (and TRUE) and could be used in many contexts. I just wanted to share it with y’all. 

As the conference came to an end today, I would like to reflect on a topic that stood out to me and sparked an interest. One lecture that I attended was called “conceptual using lives and rights; ethics of assisted dying in people with intellectual disability and/or autism.” A women by the name of Irene Tuffrey-Wigne presented on this topic, specifically looking at the Netherlands where a significant amount of the population chooses the route of assisted dying (1 in 25).

What makes this subject more complex is talking about it in the context of individuals with intellectual disability and/or developmental disabilities. The big questions asked are do these individuals have the capacity to understand the process and what they are doing? And are the right people evaluating to make that final decision.

The Netherlands are one of a very few amount of countries where this procedure is legal. I am most interested to find out about who specifically are involved in having the final say on whether a person is deemed appropriate for assisted dying. Are a specialized intellectual/developmental physician included in ALL cases? Or only some? And what is the accessibility to getting those specific physicians for your healthcare? I know for the United States, there are very few specialized physicians compared to general practitioners.  It will be interesting to find out more about these numbers and availability.

I look forward to investigating this topic further in the future. Ethics are a huge factor in this field, and it is something I need to educate myself more on.

In continuation from my previous post, I was surprised to see so many signs around the city that promote accessibility. When I went to the Gallery of Modern Art in Glasgow, I immediately noticed a sign on the front entrance that said “Autism Aware.” That made me so happy because that was the first time I ever saw something like that. The only thing I didn’t like was the fact that the sign had a puzzle piece pattern. The puzzle piece is the most common symbol to represent Autism, but many autistic people are against the symbol and prefer the infinity sign.

I also didn’t feel like the museum was actually autism aware. I felt overwhelmed. I didn’t find a map to take so I didn’t know where I was going and it made me nervous. There was also a lot of people and it was noisy, some parts were quieter. There was also a whole section of the museum that was closed off but we didn’t know until we went looking for it. I wish that the museum had a notice sooner than later. The gift shop was also very overcrowded with souvenirs and gifts that it wasn’t wheelchair accessible. I looked really quick and had to quickly leave because I needed space. I think that quiet areas in places are really useful. The only place that I have noticed them was at IASSIDD. I wish that I had more information on how the museum was “autism aware” because maybe they have special hours that they are more sensory-friendly. I would love to see more autism aware locations!!!

-Sam Costa

My experience at IASSIDD this week was unlike any academic or professional experience I have ever encountered thus far and I surely hope it’s not my last. First I’d like to comment on the overall seamlessness of the entire conference. With the exception of a few minor technical issues interrupting presentations, everything seemed to flow very well with one another. I was incredibly impressed. This connectedness was not only present in the topics of presentations, but also among the people. Despite the hundreds of researchers, advocates, and professors in attendance, shuffling from one presentation to another, the feeling of comfortability and acceptance I felt being a part of the crowd was not something I had been expecting. I initially thought we would have been excluded, being in or just having finished our undergraduate careers, but this was hardly the case. When I talked to presenters or other people in passing, I was met with excitement that we, the first undergraduate class to attend IASSIDD, had been there. It felt very reassuring and welcoming to see how joyful people were that the field they have dedicated most of their lives to is in fact growing and developing, and we are living proof.
Getting to see first-hand the amount of effort and dedication people all over the world have contributed to bettering the quality of life for individuals with disabilities in their home countries is something I will never forget. It has reminded me that no matter where you live in the world, we are all interconnected by so much more than we can possibly fathom. This has truly been one of the greatest and most life-changing experiences I have ever had and I can’t wait to share what I’ve learned with family, friends, and my future co-workers. There is still a lot to be improved for people with disabilities, but I’m more confident and inspired than ever that there is a bright #Future4All (motto taken from the lanyard)

Scotland has always been on my list of places to visit with it’s beautiful landscapes, rich history, and musical accents and I was beyond thrilled to begin my adventure. I was also incredibly excited to learn more about how accessible Scotland is and how it is implemented within the historical cities. But mingled in this excitement was a creeping anxiety.

I have my fair share of mobility issues and it was my first time going anywhere with my cane. This is my first time out of the country and I was completely in the dark about how I would get around, if I was going to hold people and myself back, and if I was going to be treated differently as a result of my disability becoming a little more visible. I knew Scotland was ripe with ancient staircases, cobblestone streets, and sprawling hills. Although I was excited about exploring, I was worried about how accepting this new place would be.

Despite a hiccup of a broken elevator at the airport and accidentally being roomed in a basement at the bottom of a staircase, I was pleasantly surprised! As the week went on, I noticed many accessible entrance signs to buildings, accommodating bathrooms, and a bursting population that includes a variety of disabilities. I saw service dogs, walkers, wheelchairs, support canes for those with vision problems, people having vibrant conversations in sign language, and so much more! Even people who were out and about on their daily routine went out of their way to be friendly by holding doors, offering seats, asking if I needed any help, and just generally asking how I was and being interested in who I was as a person. I was so relieved to witness such inclusion and was so eager to learn more through our upcoming tours.

Despite all the positives I witnessed, there still are struggles for those living in Glasgow who have disabilities. The wonderful people at GCIL (Glasgow Center for Inclusive Living) enlightened me to the struggle people have with finding accessible housing in the city. They shared a (incredibly well produced) documentary highlighting the story of three people and their journeys to find homes. I was especially shocked about the woman who had to live in a nursing home because there was simply no other suitable place for her. While the struggles are still very present in this city, I also witness a community that is working together for change. Organizations such as GCIL work to not only house people, but help them thrive with support, training, employment assistance, and even more. They give people the confidence and tools to live fulfilling lives and that fills me with so much hope. Organizations like GCIL are so imperative to set an example for change. Even though this city is still a struggle for many people, there is hope, and it makes me excited for the future of accessibility.

It’s our last night in Glasgow!! This was my first time traveling pretty much all my own and it was also my first time in Europe!! I’ve been having an amazing time since day 1.

When I arrived in Edinburgh, I was the first person from UMass there. I spent about 3 hours waiting for everyone to arrive. While I was waiting I had to use the restroom and I noticed something that the US doesn’t have. I was so happy to see the bathroom labeled as “accessible toilet” instead of using “handicap toilet. Underneath the bathroom sign, there was another sign that read “Not all conditions are visible with everyone using these facilities.” I was so happy to see that! I feel that a lot of people don’t realize that invisible disabilities are real and valid disabilities.

I also noticed a few other signs that expressed accessibility in Glasgow. When we went to the Bridge of Allan Highland games, I saw a poster advertising a Disabled Persons Railcard for the train. The Disabled Persons Railcard gets 1/3 of your fare off for you and another person. I thought this deal was amazing because some people with disabilities might get overwhelmed when traveling alone or they are unable to travel alone and might need a companion. The only thing that was surprising is that the train station and the train itself was not that accessible. I only remember seeing one ramp, on one side of the station. There was also a really big gap between the platform and the train, it was kinda scary. Not only was there a gap, but the train was also about a half-foot taller than the platform. I saw an individual with a cane struggling to get off the train because of the gap and no one offered to help or did anything. I think that the bus was a more accessible means of transportation.

Besides that I love Glasgow, and everyone is so nice here!

• -Samuel Costa

The title of this blog is also the title of the most thought provoking and interesting round table discussion I attended at the conference this week. In my opinion, Sheila Hollins was the most powerful presenter from the group because she had some really personal details to provide basis for the rest of her ideas on euthanasia/physician assisted dying. She has two children with IDD and one of them, her daughter, was involved in an assault that left her with a major spinal injury. The doctor had to be persuaded into resuscitating her by Sheila because he had assumed that her quality of life was already poorer than that of the general public and saving her, leaving her paralyzed, would just make it that much worse. Another powerful story shared by one of the members of the audience was about how a patient with IDD was sent to die due to a UTI. This brings to a light the particular issue of general practitioners’ lack of training with intellectual disabilities. For something as important as dying, you would think the doctor recommending and signing off for this would specialize in IDD if they were working with IDD patients. After the round table was over, I went up to speak with Sheila Hollins who mentioned that she now works as a member of the House of Lords. My great aunt was formerly the Lord Speaker in the House of Lords and I figured they had to have had some overlap in the field. It turns out my aunt was one of the leaders in passing a bill for assisted suicide for the terminally ill. This sparked a conversation I’d never thought I’d be having with my aunt but I can’t thank these particular presenters enough for making me so curious and invigorated and empowered.

Last day at IASSIDD… first blog post? ???????????

Today’s keynote presented by the National Involvement Network was amazing. The chance to listen to self advocates for disability rights was so valuable and the best way to cap off this week at IASSIDD. 

The work being done by the charter network is all inspiring. I enjoyed listening to their personal stories that went along with each of the points made in the charter. There was a quote in one of the videos that stood out to me. – “I work at McDonald’s and I love my job”

This was important to hear. This individual LOVES his job at MCDONALDS. (So controversial to some other things that I heard in talks this week about quality of life)

“well, it’s a job at McDonald’s… we should help him do something more…” 

^ that is just us pushing our societal norms on these people. He loves his job and it’s his choice to work there. THIS is self determination. He has decided that this is what he wants to do. Everyone should have the right to decide their own happiness!

The work being done by the charter network helps to negate the pushing of values by caretakers and service providers. This was one of the best talks that I attended all week and I am excited to bring their book home with me!

(Also, earlier in the week I witnessed  a women approach a presenter from TILL who spoke about her independent living situation. This women ignorantly argued with the presenter and claiming that her living situation was not “independent living” because it was not the same as hers. I was so mad. This women failed to recognize that we all define our own independence. Someone may need to be reminded to take their pills and still feel as though they are living independently.)

This conference was amazing. Had a great time.

-Liam Eagen