Since April 2017, the Scottish government gained new powers to decide on the employment conditions for disabled people. Mark Cooper is a devoted campaigner for disabled rights in Scotland. In October 2016, he attended the Rehabilitiation International Congress on behalf of Cosmopolita Scotland, where these new powers were announced. In his account of the event, Mark describes on how his experience at the congress affected his view of disability employment and reflects on how the experience has stayed with him over the past year.
Pilar Lima is the first elected official who is deaf in Spain. She has a very extensive professional and activist career. She has been a volunteer at the Vicente Ferrer Foundation in Anantapur and also a professor in several public and private institutions that promote the divulgation of sign language. Among many other projects, she is a co-author of the book ‘Sordo ¡y qué! (Deaf, so what!). In her first speech in the Senate, and with the assistance of an interpreter, she promised: “to work to eliminate any barriers that lead to inequality and infringe on human rights, through a participatory and transparent use of the Senate”. Pilar sees the upcoming elections on December 20th as an opportunity to achieve this change.
Pilar Lima es la primera senadora sorda en España. Lima cuenta con una amplia trayectoria profesional y activista. Fue voluntaria en la Fundación Vicente Ferrer en Anantapur y ha sido profesora en diferentes entidades públicas y privadas que promueven la divulgación de la lengua de signos. Además, entre otros proyectos, es coautora del libro Sordo ¡y qué!. Ahora es la primera senadora sorda del país. En su primera intervención en la Cámara Alta, y con la asistencia de una interprete, prometió “trabajar para erradicar las barreras que provocan desigualdades y que atentan contra los derechos a través de un uso participativo y transparente del Senado”. Pilar ve en las próximas elecciones del 20 de diciembre una oportunidad para realizar este cambio.
¿Somos conscientes de cómo afectan nuestras actitudes a las personas con minusvalías? ¿Nos influyen negativamente las convenciones sociales cuando nos relacionamos con personas discapacitadas? ¿Cuántos de nosotros somos capaces de imaginarnos a una persona ciega europea haciendo turismo y surfeando en Sudáfrica? Jean Cathro, tomadora de apuntes para estudiantes discapacitados en la Universidad de Edimburgo, sí que pudo y en 2014 fundó Crossing Countries (Cruzando Países en inglés), un proyecto que ofrece oportunidades de voluntariado para todos. Cosmopolita Scotland ha conocido de cerca (1) esta empresa social y ahora Jean se lo cuenta personalmente a nuestros lectores.
Are we truly aware how our attitudes affect people with disabilities? Which unspoken social conventions negatively affect how we interact with them? Can you imagine what it’s like to be a blind European going surfing in South Africa? Jean Cathro, a note taker for disabled students at the University of Edinburgh, understood these questions far better than most. That’s why, in 2014, she founded Crossing Countries, a project that offers opportunities for everyone and anyone to volunteer abroad. In this editorial, Jean tells us all about this exciting social enterprise.
A lot of the online information about dementia is either quite simplistic, overly technical or use negative language. However, there are also many great resources about dementia which are both entertaining and fascinating.
Here is a list of our Top 12 Online Resources about Dementia.
In our interview, Alison described Kate Swaffer as a “dementia activist”. Swaffer, who herself has dementia, certainly campaigns tirelessly to improve the media’s choice of language when talking about people with dementia. She also has a highly interesting blog. She was a major contributor to Alzheimer Australia’s Dementia Language Guidelines, which are available for all to use:
Dementia Language Guidelines: https://fightdementia.org.au/sites/default/files/full-language-guidelines.pdf
Despite the name, the Alzheimer’s Reading Room is a great place for information about all types of dementia. This particular post gives 10 tips on how to communicate with someone with dementia.
Frontotemporal dementia (FTD), of which Pick’s disease is a type, often affect young people of under 65 years. It affects a person’s personality and judgement long before it affects their memory. This page has some fascinating stories from people with FTD themselves on what it is like to live with this type of dementia.
There is really a huge wealth of information about dementia online. This list of 20 blogs about Alzheimer’s and dementia are a great place to start.
Young, or Early, Onset Dementia starts before a person is 65. This UK charity provides support for people and carers, but also publishes people’s stories and links to personal blogs of people with dementia.
Personal Blogs from People with Dementia
It is not so common to hear from people with dementia themselves. However, the voices of people living with dementia can be found, if you only choose to look. These personal blogs give unique insights into the lives of people with various types of dementia in their own words. We recommend to read through the archives of these blogs, as some of them have been more active in the past than they are now.
Silverfox’s blog is sometimes funny, sometimes touching and always insightful about the challenges of having this type of dementia.
Kris has been blogging about her life with early-onset Alzheimer’s for 12 years now and still writes as elegantly as she did at the beginning. Her words are a true testament to how far from being “gone” people living with dementia are.
@mason4233 has diagnoses of both vascular dementia and Alzheimer’s. His blog features poignant snapshots into his life as well as guest posts and reposts from other writers.
Ken Clasper is an Ambassador for the Lewy Body Society and posts to his blog with both personal stories from his life with dementia and also about recent developments in research.
Another person with Lewy Body Dementia, this blog has been going for two years now. She not only posts about her own life, but also regularly links to creative work by other people with dementia symptoms.
Communities for People with Dementia
These two communities are good online meeting places for people with dementia. They are closed groups, specifically for people with dementia and their carers.
This Facebook group was founded in 2010 by Rick Phelps, who was diagnosed with Early Onset Alzheimer’s Disease. It is still going strong today and is a dedicated closed group which provides no-nonsense support for people with dementia and their carers.
Howard Glick has done lots to promote the online community of frontotemporal dementia through his FTD Support Group and has launched a dedicated Facebook group only for people with FTD. This is his blog, which gives instructions on how to join. He doesn’t hold anything back with this journal of his life with FTD.
For blind and visually impaired (1) readers, their ears are their eyes. Their favoured way to access literature is through audio books, a fact which is not well known by the non-blind community. Also unknown is the fact that many people in the blind community are not able to read Braille and that only about one to five percent of books published worldwide are accessible to the blind or visually impaired population, according to the Spanish National Organisation of the Blind (ONCE). Moreover, of this small percentage, most tactile books are aimed at children. Philipp Meyer, a student of Interaction Design from Denmark, decided to challenge all these conventions when he published ‘Life’ in 2014, the first comic for blind adults. In this article, Aida Cercas and Noelia Martinez introduce us to the world of sensory arts and literature.
Para los lectores que han perdido total o parcialmente la visión, sus oídos son sus ojos; y su modo más popular de acercarse a la lectura, el audio libro. Esto es algo que con frecuencia se desconoce, como también se ignora que no toda la comunidad invidente conoce el lenguaje braille y que solo entre el uno y el cinco por ciento de los libros publicados en el mundo son accesibles para personas ciegas o con baja visión, según cifras de la Organización Nacional de Ciegos de España (ONCE). Además, de ese pequeño porcentaje, la mayoría de las imágenes y libros táctiles están dirigidos al público infantil. Philipp Meyer, un estudiante danés de diseño de interacción, se propuso desafiar todas estas convenciones (1) y en 2014 publicó Life (‘Vida’ en inglés), el primer cómic para invidentes adultos. En este artículo Aida Cercas y Noelia Martínez nos introducen en el mundo de la literatura y el arte sensoriales.
Proveer a los usuarios sordociegos de un alojamiento adaptado fue uno de los motivos por los que Asociación Catalana de Personas Sordociegas (APSOCECAT), en colaboración con la Federación Española de Sordoceguera (FESOCE), se reunió con Sense Scotland, en Glasgow, el pasado octubre. Guillem Lisarde hizo de anfitrión para las trabajadoras de APSOCECAT en una de las paradas que hicieron en Edimburgo.
The provision of adapted accommodation for deafblind service users was one the main motivations behind the visit of the Catalan Association for the Deaf People (APSOCECAT), in partnership with the Spanish Federation of Deafblind People (FESOCE), to Sense Scotland, in Glasgow. Guillem Lisarde from Cosmopolita Scotland hosted the Catalan workers in an outing in Edinburgh.