Growing up surrounded by nurses I have seen firsthand the physical and emotional toll it takes on a person, and the dedication to patients that keeps them doing it. Nurses are a very special type of person. They are selfless, strong, smart, and patient. Coming from a family deeply rooted in the career, I was so excited to learn about the nursing program at Napier University.

A difference that particularly stood out to me is the specialization programs. In the US, nursing school is very broad, and to specialize requires additional schooling. In Scotland, you can choose your specialty, like adult care or intellectual disabilities. This was an interesting concept to me, nursing education in the US is so broad that those with specific conditions can struggle when they require care.  While a broad education is incredibly helpful to treat a broad range of patients, getting specific without additional schooling and money is also a great concept to have. I was so excited about this program and how amazing their facilities were, I was beyond shocked to find out their pay.

Nurses here are severely  underpaid. So underpaid that it is barely enough to live. Some have to get second jobs or find a new profession entirely. The man giving us the tour recalled a woman who left nursing to work at Tesco (a grocery store) because it was better money. I looked into it further, and the average pay is  between £21k – £38k in the UK, vs $46,890 – $87,261 in the US.

I was shocked. Nursing is an incredibly vital role in the healthcare system, especially with the current shortage the UK is having. Nurses quite literally have people’s lives in their hands, and without them many people would suffer and likely die. They deserve way more than they are getting, both in monetary appreciation and overall appreciation. The fact that many nurses can’t live off that pay is horrible. Nursing is such a demanding job, especially in the specialty fields like intellectual disabilities and mental health. Most nurses dedicate their lives to bettering people’s health and often put patient needs in front of their overall health. They deserve way more than what they’re getting, and how it is now isn’t likely to improve the shortage the UK is experiencing.

My experience on this trip so far has been amazing. Everyone has done their best to be accommodating and wonderful as I navigated with my trusty cane. Unfortunately, as Glasgow turned into Edinburgh, I found myself needing my wheelchair. I was very  worried. The cane was fine, but a bit difficult. How would it be navigating with wheels? Well, it was definitely an adventure.

Just getting out of my room was a struggle. Doors swung inwards and I am very bad at wheeling myself. I thankfully could get up and open the door but it would have been much harder if I couldn’t. I met some friends outside and attempted to wheel myself to my destination but due to the sloped sidewalk promptly ended up in the grass. Thankfully, someone took over my navigating and pushed me.

The train itself was a mystery. We found the carriage marked with the wheelchair symbol and looked around for a ramp. We didn’t see one and were looking around lost when an employee appeared and took it out of a closet. He slammed it down on the step, clicked it into place, and that was that. The ramp was very steep, very narrow, and very scary. I fit and made it up with assistance, just barely. I am not sure how a motorized wheelchair would fit since they are wider. On the train, people did not move from the assigned wheelchair area, so I was faced at the door looking out of the window. It was a isolating experience that made me unable to turn around and contribute to conversation. I was also where the doors opened at out stop so I had a rush of people swirling around me to get out of the train. The elevators at the station ranged from very tiny to very large. Again, in the smaller ones, I’m not sure how a motorized wheelchair would fit. Now, to the streets!

I soon found out cobblestones and curbs are a wheelchairs worst enemy. I was constantly getting caught on the jutting stones and the sidewalks rarely had a dip. We decided a cab was the best option to get us to our destination. The trunk was very similar to the train in which he took it out of a trunk, slammed it down, and up I went. Thankfully, the driver pushed me up because the ramp was very steep and I was nervous. Finally, we were on our way to our destination, The Number Six One Stop Shop.

The Number Six is a service for those with autism 16+ that provides social opportunities and various support. I was so excited to learn about this place but upon arrival, discovered the biggest enemy of my journey…stairs. There was no elevator or any accessible access to the upstairs where everything took place. Thankfully, I could stand and by half carried up the steps. I was lucky in that regard, but many aren’t. I spent the site visit reflecting on the irony of the situation. How could a service that provides support and accessible opportunities to people be inaccessible? The answer was a very sad one, money. That building was simply the one they could afford.

Unfortunately, this is a dim reality for many people. No matter how many obstacles they face just getting to the services they need, even those may not be accessible. Beyond these obstacles, many mental ones are created as well. For example, in the frequent situations where I was faced with curbs, cobblestones, and hills I frequently needed to be lifted or pulled. It is very embarrassing having to go through such a thing, and my independence and dignity took many hits. When we arrived at the destination I already was feeling very small, and seeing those stairs made the last of my willpower wither away. I thankfully could get up, but many can’t. This is an every day battle for many people, with the physical barriers they face navigating and the emotional hits that come with it.

In a previous post, I wrote about the people pushing for change. While that is still very present, change is a slow and hard process. My experience in a wheelchair is from a singular perspective from a tourist, in a large group of people willing to help, and I can get up if needed. If I had such a hard time, how hard is it for people who live here, do not have the support I have, and are unable to get up from a wheelchair? It is something that has stuck with me for the rest of this trip. Change is crucial, but so many people are forgotten or left behind because it is too difficult. It’s such a present and important problem and I hope to see that improve soon.

Throughout our time in Scotland, we visited to many amazing sites and organizations that aim to aid individuals with disabilities in some way, shape, or form. Although all the sites we visited were amazing, I have to say that learning about Number 6- Autism Initiatives was one of my favorites. Throughout my time at Umass and at the IASSAID conference, I have learned a lot about the resources and research surrounding the needs of intellectual disabilities and Autism with greater needs of support. Although I am extremely grateful for all the everything I have learned so far, I have not seen a lot of information surrounding individuals with “higher functioning” disabilities, such as aspergers. From personal experience, I have witnessed how supports for aspergers usually disappear once the individual leaves the school system, even though understanding of social cues, social interactions, and more can still impact their daily lives. I loved learning about Number 6 because it showed me that supports for these individuals exists. I love the fact the Number 6 provides an environment for all individuals on the spectrum to develop social skills without making individuals feel judged. I also love the fact that this organization aims to encourage individuals a part of this group to create friendships outside of the organization to develop real and genuine friendships. Overall, I loved learning about Number 6 and I hope to see more resources in the future that aid individuals with aspergers like this amazing organization does.

Although I was reminded throughout this whole trip that the world (especially the old world!) was not built for people with disabilities, the final reminder was on my flight back.

When boarding our flight to London from Edinburgh we were directed to use a set of long stairs down to the tarmac. We were then directed to walk down the tarmac next to the plane to a staircase up to the doors. I did not see any elevators, any lifts, or any options for someone with a mobility problem to board this plane. What would they have done if someone had booked this flight and was in a wheelchair?

This brings me back to a question asked by the final disability advocacy keynote speakers at IASSIDD. At the end of their amazing presentation on their charter they asked the audience how to make the conference more accessible to people with disabilities. This is a multifaceted question, but from what I saw today- travel can be a huge barrier to conference attendance for people with disabilities. This is why I believe that a good solution to this travel issue is to offer some sort of “virtual ticket” that disability groups, parents, advocates, students, (anyone!) can purchase to attend the conference virtually.

The addition of a virtual ticket would open the conference up to so many new people who may have never had the chance to attend due to travel, travel expenses, medical reasons, etc. this could open up new discussions and add new points of view from everyone everywhere and truly make IASSIDD an international experience!

IASSIDD if you’re reading this, let me help you plan! Chicago 2023!

All the best,

Liam Eagen

I don’t think I could have ever imagined having an experience like I did here in Scotland. The past two weeks have been some of the most fun, educational, and inspiring times of my life.

I knew coming into this that IASSIDD would be incredible. But I had no idea about the people I would be able to talk to and connect with, and how many people I would truly be able to have a conversation about the international perspectives and contexts of disability. The site visits definitely took me by surprise as well. I was not as excited for site visits because I thought that it would be more of people trying to endorse their university, rather than promote and advocate for individuals with disabilities. I was pleasantly surprised to hear how passionate some of these employees were about the field of disability. I was especially impressed by Edinburgh-Napier, and Sam who conducted a very interesting and engaging talk. He informed us of many different areas not only in disability, but also in higher education and the way in which healthcare in the government worked.

Beside the conference and site visits, I made some great new friends. It can be super daunting to hop into a two-week program in a different country with people you haven’t spoken more than a few sentences to. To say I was nervous before is an understatement. Having a group of like-minded individuals who all come with different backgrounds, experiences, and knowledge was amazing. I couldn’t have dreamed this trip any better and I am so excited to go home and share my stories.

Even though the World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities came to an end over a week ago, I can’t stop thinking about one of my favorite presentations about intervention and challenging behaviors. A man from Canada presented about a particular computer program that would train parents with children with challenging behaviors due to their intellectual or developmental disability. Even though this man was particularly casual in his talk, usually several inappropriate jokes about handling children, his overall idea was inspiring. In Canada, there is a waitlist that can last 7-8 years for diagnoses or access to healthcare needed for people with IDD. By providing a simple training program as easy to access as just typing a website into your browser and participating for a couple hours, parents can change their children’s lives. It is increasingly acknowledged that children benefit from getting intervention as early as possible, and if they’re waiting for 7-8 years, then they’re hardly even children anymore by that point. This online training program seems like the next best thing for those who need cannot access the healthcare they need and I would definitely recommend this to any parent in need.

As we were walking through the streets of Edinburgh this past Saturday, there were numerous amounts of buskers singing, playing instruments, or showcasing their talents in obscure ways with different kinds of props. There was one individual, however, that stood out to me in particular. There was a man, maybe mid-thirties, with Down Syndrome playing the violin. What struck me the most about this is you hardly ever see people with disabilities displaying themselves in public like that; proud and unafraid. He was so happy to be doing what he was doing and I ended up seeing him play his violin again on the streets a couple days later. Of all the buskers I had seen throughout this week in the city, no one had more change in their cup or more people standing around watching and listening than this man, regardless if differently abled people may have been better at their respective talents. It seems like such a small thing for a man like that to play his violin in the town center, but the more people with IDD do things like that, the more it will influence others with IDD to as well. It really just shows how open and respectful the people of Scotland are towards people with disabilities.

Being in Scotland for a disability conference made me, and I’m sure all of us, more aware of elements of accessibility or inaccessibility in the places we visited over the course of this trip. The fact that someone in our group had to navigate the environment in such a way only made the attention I paid to this issue stronger. Through hearing about her experiences and being a part of some of those, I noticed many great examples of accessibility, such as wheelchair accessible taxis and a kind and attentive Harry Potter tour guide, as well as numerous instances of inaccessibility. The most frustrating flavor of this experience was that many buildings, due to when they were built, were only accessed via stairs or at least a single step up or down from the outside sidewalk. Once inside some of these buildings, it was necessary to climb additional steps if you wanted to access the full interior space. Honestly, to say this was frustrating is quite an understatement. However, while these accessibility issues are incredibly infuriating, I can also imagine how frustrating it must be for the building owners/renters who want to make their space physically accessible but are unable to as a result of local laws prohibiting such structural or aesthetic changes to their property and a lack of spatial and financial practicality of making changes that are actually legal. We heard these frustrations voiced at our Number 6 site visit. 

The point I’m trying to make is that, despite the recognition of and want for accessibility, many individuals or groups in Scotland, and I’m sure the surrounding area, find it’s simply impossible to make any needed changes due to various rules. Because of this, I see the lack of accessibility as a policy issue. At the same time, I think it’s still very much a social issue because people’s views are what shape that policy. I can easily see some people’s want for maintaining historical accuracy or culture impacting accessibility policy in a regressive way. In yet another way, it’s a practicality issue as it’s, understandably, difficult to update buildings that were not initially built with the necessary space or structure to allow for ramps, chair lifts, etc. to be built there. So at this point, I see inaccessibility as a policy issue, a social issue, but most of all a spacial and structural issue. Do you guys agree with the causes I mentioned? What other factors could lead to a lack of physical accessibility?