During our visit today, we learned about Queen Margaret University’s disability services, specifically their new focus on accessible technology and the changes that they are proposing to make technology more user-friendly for people with intellectual disabilities. This was a topic that I briefly learned about during our country profile assignments. I studied Denmark, which is also beginning to focus on accessible technology. Whereas QMU is mainly addressing this relatively new topic from a student’s perspective by proposing changes to the schools webpages, appointment signups, and class attendance tracking, the limited literature I found from Denmark was approaching the topic more generally by proposing improvements to public news stations and government webpages with the inclusion of different subtitle options and webpage designs.

While doing my country assignment, I was interested to learn about Denmark’s initiatives because technology is such a large part of our current society and its inaccessibility leaves people with disabilities at a significant disadvantage both in their personal and professional lives. However, Denmark seemed to be in the early forms of planning and had not had any serious advances in implementation that I had found. Hearing from QMU about their use of ID badges, user friendly webpages and appointment signups, in addition to adaptive appointment reminders used by different therapists for people with intellectual disabilities illustrates that these changes can be made very easily and can have a great impact on students with and without disabilities. Hopefully, continued improvements in smaller settings such as QMU will spark improvements throughout society!

Throughout the majority of our site visits, the speakers have addressed accessibility and accommodations in historical buildings as a primary issue for people and students with disabilities. Inclusive living centers and universities have had difficulty putting up ramps and installing elevators in older buildings because it does not coincide with the historical accuracies of the area or “devalues the home.”

This raises concern because it significantly threatens the quality of life that people with disability have as they try to navigate throughout society, despite the relatively low costs of the accommodations. But even further, it raises concern on the type of history we are trying to preserve.

In school we learned about the systemic mistreatment that people with disabilities have faced throughout history, including institutionalization, violence, and ignorance. These issues were further highlighted during our ghost tour, when our guide explained the story of the Earl of Drumlanrig who was described as being “born different”, “psychotic”, and even a “cannabolistic imbecile”. The guide explained the story of the young earl who was isolated from society since birth and resigned to a guarded and locked room where he was only allowed to see sunlight for one hour a day. The story goes that when the earl was 12 he broke out of his room and killed and ate a kitchen boy.

I tried to research the story more but couldn’t find information on the story’s legitimacy. Nevertheless, the story illustrates the awful treatment and care that people with disabilities faced in our history and how stories like these are can be fantasized and used to perpetuate the ridicule that people with disabilities can unfortunately face.

This story was striking to me because it illustrates the mistreatment that people with disabilities faced throughout history and made me think about the type of history we are trying to preserve by placing restrictions on accommodations in these buildings. It seems like an injustice to refuse accommodations in the name of historical preservation when Edinburgh and the rest of society holds a past that was so disrespectful towards theses groups. Instead, we should be focusing on improving our society and infrastructure to better support all of its citizens.

This morning, I attended the program on “Epilepsy – an orphan disorder in the intellectual disability and neurodevelopmental family.” I wanted to hear the discussion on the topic because through my work as a PCA and a developmental specialist aide at Riverside, I have worked with many clients who have epilepsy in addition to their primary disabilities and was hoping to learn more on the topic and gain insight on how to give the best care to people with this condition.
The first presenter Paula McGowan presented “Oliver’s Story”, which was about her son who had a mild form of ASD and occasional seizures due to epilepsy. Paula shared a powerful story and explained how in 2016, Oliver was given antipsychotic medication for a cluster of seizures and as a result of the medication experienced brain swelling so severe that he later passed away. Oliver’s previous doctors had provided documentation that these drugs should not be given to Oliver because of their adverse effect and both Oliver and his family had communicated with the new hospital that they did not consent to this plan of care.
Paula’s story illustrates how important it is for healthcare workers to be specially trained in the treatment and care of people with intellectual disabilities and how important it is to approach treatment with a holistic mindset that takes into consideration all of the patient’s comorbidities. In Oliver’s case, the treatment he received was not personalized and did not consider his ASD or epilepsy uniformly and Paula stared that she strongly believes if her son did not have an ID, his plan of treatment for his seizures would have been approached in a completely different manner and he would have been alive today. Further, their story illustrates the importance of training for healthcare workers on how to communicate with patients with ID, so that the patient is fully aware of what is occurring, feels comfortable in the situation, and can offer their consent or dissent. I’ve provide the link to Paula’s campaign website where she goes into better detail of Oliver’s story and touches on some key elements that we should all consider before we start our carriers in the field of disability.

https://www.olivermcgowan.org/

After attending the conference for the first day, I was impressed by the variety and depth of topics included. I enjoyed listening to the keynote speaker discuss The prevalence of Autism and potential research for the future. I also attended a discussion on a challenging behavior which discussed recent research on PBS and ABA implementation for people with intellectual disabilities in the daycare setting specifically. I also enjoyed talking with Project Ability about their art workshops and outreach programs offered to people with disabilities as a way to participate in and sell their art work, while also earning 60% of the profits.

However, throughout my experience I was surprised by the lack of alternative communication provided. I was hoping that the presentations would have sign language interpreters or subtitles offered for people attending that might have hearing impairments. This specifically surprised me because I know there are many people attending, presenting, and working at IASSIDD who have different disabilities. I will be interested to see if there are more adaptive options throughout the conference and if any form of alternative communication is used!