sally.geek.nz

Category: Low Vision

  • How I see it … assistance and normalising disability for an inclusive society

    Currently, I am in the UK for a family funeral/memorial while Guide Dog Sienna has a holiday in NZ. One thing that has stood out to me is the amount of mainstream assistance that is available for people with disabilities to participate in community life in comparison with NZ. I will describe some examples and comment on how I believe these normalise disability in society and work toward inclusiveness.

    The first place I noticed this was on arrival at the airport. I arrived at Heathrow Airport and had to meet and assist booked, which gave me the usual assistance to identify and collect my luggage and move around the airside area of the airport. What set this apart was the ground travel assistance – non-airside.

    I needed to travel from Heathrow by coach to Gatwick Airport. The ground service staff were available to help and because of this, I was escorted from the arrivals gate to the bus station and assisted in finding the correct bus and introduced to the driver. I was particularly impressed with the inclusion in the discussion and handover. The bus service then radioed ahead and had ground staff meet me at Gatwick to walk me from the bus to the entry I needed to be at.

    I thought this may have just been an airport service. I was surprised that passenger assistance services on trains, buses and many public places are just a normal part of society, and companies are expected to provide this service. This is one way I think can go a long way toward normalising those with access needs by allowing them to act as fully as they would in the community. The significant difference between the UK seems to be the Equity Act or legislation to protect against discrimination. The equity act is explained in relation to those who live with a disability on the Disability Rights UK website and equity advisory service.

    I was surprised to find how extensive passenger or customer assistance is, for example on trains, an app allows anyone with a disability to book assistance getting through the station to their train, transferring trains, finding seats and much more. Firstly there was no need to prove disability on booking. Furthermore, bus companies have a tick box if you require assistance and this is organised for you. The sense of inclusiveness that being out and about with assistance normalised in society bought is hard to describe and I believe is something that NZ could learn from to enable participation rather than being disabled or devalued by community constrations to participation.

    In NZ, I have experienced those who work in the service industry avoiding interactions with me and being apprehensive about approaching me. What I notice here in the service industry is little fear about approaching, offering assistance or asking how they can help. This has also contributed to inclusion rather than the exclusion that society institutionally provides.

    The other built-in things I have found to assist those who live with a disability that is not common in NZ that benefit not only those with access needs but also the general population:

    • Hearing Loops (albeit telecoil) on buses and trains allow me to connect my hearing aids and hear announcements.
    • Verbal announcements of stops on buses.
    • Far more braille and high-contrast signs.
    • Some tactile and braille signs at attractions and busy places.
    • Large print menus.
    • For payment at the table in restaurants, it is common to bring the EFTPOS machine to the table instead of going to the counter.
    • Far more restaurants with either large print menus or QR codes for devices to allow access.
    • Online ordering in restaurants negates the need to walk up to a busy and crowded bar.
    • Wheelchair ramps are built into London and South buses.
    • People give up priority seating for those who need it, e.g. elderly or those with a disability (even on the tube)
    • Staffed lounges at bus and train stations for those with access needs that offer ticket help, toilets, seating and people to walk you to the gate.

    What could be improved is the consistency of street crossings, ramps, step size and audible or tactile traffic signals.

    With this in mind, I challenge Whaikaha and the NZ Government to produce legislation with teeth to grow a more inclusive, supportive and accessible society.

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  • How I see it … A broken system

    As a deafblind woman who is articulate and has worked in the healthcare sector, interaction with government agencies is still necessary and can be extremely challenging.

    In my experience, our system is flawed. One of the fundamental issues lies in the negative and deficit perception of disability often fostered within our society and institutionally in health and disability services.

    In the past, disability has often been viewed through a lens of deficit or as something negative. In today’s society, this perception appears to have transformed into the belief that disability is a problem that needs to be fixed to align with societal norms. This perspective can have significant consequences and impact the trust individuals have in the health and disability system.

    In the following blog post, I will describe a personal situation where a service agency has considerably affected my ability to trust our health and disability system. By sharing this experience, I hope to shed light on the challenges faced by individuals with disabilities and the importance of fostering trust, empathy, and understanding within our healthcare system. Together, we can work towards a more inclusive and supportive environment where everyone feels valued and their needs are met with dignity and respect.

    In the past, I have received repeated assurances from the organisation involved that my disability is permanent and meets their criteria for blindness. There will be no future need to re-establish this fact as this decision has been to their health team and principal advisor in the past. Even with these reassurances, I still have recurring demands to prove the extent of my disability and threats or actual services stopped at each interaction.

    The situation above undermines not only my lived experience of disability but also erodes my trust in the support services designed to assist individuals in similar circumstances. The emphasis on proving the extent of one’s permanent disability can be profoundly demoralising, distressing, and prolonged, further exacerbating the challenges already inherent in navigating life living with access needs.

    Drawing a thought-provoking comparison between the justice system and how people with access needs are treated in society can highlight important disparities. In the justice system, the principle of “innocent until proven guilty” ensures fairness and protects individual rights. Once a decision is reached in a trial, it generally remains unless challenged through an appeal process.

    However, for individuals with access needs, particularly those with proven permanent disabilities, it can be disheartening that their disability status is continually questioned or subjected to reassessment. This contrasts the justice system’s approach, where the burden of proof lies with the prosecution. In the case of disability, it seems more equitable to adopt a “disabled until proven otherwise” mindset. Requiring individuals to repeatedly prove their disability can foster an environment of distrust, casting doubt on the credibility of the individuals and the healthcare professionals involved in determining their level of impairment.

    By recognising the parallel between the justice system’s presumption of innocence and adopting a similar approach for disability, we can promote a more inclusive and empathetic society. Such an approach would prioritise trust, understanding, and respect for individuals with access needs, alleviating the burden of constantly reaffirming their disability status.

    The below interaction is one I have around every six months with a particular agency providing support services to those with access needs. This occurred again yesterday (the third time in under two years) and as a result, I am left feeling devalued by agencies that interact on behalf of the society I live in.

    After providing my identifying details and engaging in a conversation, I initially believed that everything was in order and no further interaction was required. However, I later received a phone call stating that I no longer meet the agency’s criteria to be classified as blind and they are withdrawing their support services.

    This immediately made me believe that for some reason I wasn’t worthy of their support. On further questioning, this was without any new information being requested, presented or obtained beyond what had already been examined and approved as being used to determine I am blind on two separate occasions. This illustrates the power that one person or organisation can have in determining anothers life path or future.

    Ever the advocate, I checked their website and publically available manuals, as well as legislation around blindness and none, had changed since last time. Thefore, I asked for specific details on where I no longer met their criteria. Still, instead of receiving a direct response, I encountered avoidance and the need to consult with their manager.

    When the manager did reach out, they stated that their health team believed I no longer met their criteria. In response, I provided copies of all of the documentation, which had been examined and deemed sufficient to meet their criteria for permanent blindness previously.

    I explained that this contradicted your ophthalmologist’s assessment and the supporting documentation and referred the manager back to the letter containing my assessment that used the same language and criteria published by the agency to prove my blindness once again; I was told that they would need to go back to the health team to clarify.

    Later, the manager informed me that the health team would seek advice from a Principal Health Advisor and get back to her … and now I wait … to find out if I am deemed disabled enough to recieve services that I have been assessed as requiring permanently and been recieving for several years now.

    This sequence of events highlights the inconsistencies, lack of communication, and delays within the agency’s decision-making process. The fact that multiple layers of consultation and review are required after assurance on several occasions, I am eligible, meet their criteria as blind having gone through managers and health advisors in the past and would not be asked again is not only confusing but distressing.

    The threats of service cessation have been conveyed predominantly over the phone, without a written record of the challenge to disability status; therefore the interactions and related power imbalance involved remains invisible. Open communication that is visible is required, along with active engagement between individuals with disabilities, healthcare providers, and service agencies, is crucial in fostering trust, enhancing understanding, and promoting inclusivity.

    By involving all relevant parties in the decision-making process and maintaining transparent lines of communication, we can ensure that eligibility decisions are made fairly, with empathy and transparency. This approach helps mitigate the distress caused by sudden and unexplained changes in service provision. Having a documented record of discussions and decisions provides clarity, accountability, and an opportunity for individuals to voice their concerns, thereby fostering a more inclusive and supportive environment for individuals with disabilities.

    It is important that service agencies recognize the significance of open communication, actively engage with individuals with disabilities, and collaborate with healthcare providers to ensure that decisions regarding eligibility and service provision are made in a fair and transparent manner.

    New Zealand has taken significant strides in tackling these issues through the implementation of the enabling good lives principles. This approach holds great promise in transforming the perception of living with a disability and empowering individuals with access needs. While commendable, it is important to acknowledge that the services aligned with these principles encounter hurdles rooted in their current systems and processes. By addressing these challenges head-on, we can bridge the gap between theory and implementation, thereby ensuring that the true essence of Enabling Good Lives is fully realized. This will allow individuals with disabilities to access the support and assistance they deserve, free from unwarranted scrutiny and uncertainty. With a collective effort, we can foster a society that embraces inclusivity, optimism, and empathy for all its members.

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  • How I see it …. gaining access is sometimes invisible

    A woman covering her face with a book.

    I am an articulate, well-educated person who practices self and systems advocacy regularly. These days I rarely encounter problems I cannot find a workaround to mitigate. However, the below example illustrates the extra effort that a disability can bring to something as simple as purchasing a textbook and the often hidden time and effort those with disabilities use to find solutions.

    To improve my article writing, I enrolled in a 12-week course that relies heavily on a textbook and the activities within that textbook. With today’s technology, such as Amazon Kindle and Audible, I thought obtaining an electronic textbook could be more straightforward. The course is framed around working through the 12 chapters of the book and meeting weekly with a group of colleagues after completing reading and associated writing tasks.

    As I write this, we are in week four of the course and as someone who is blind, I am finding it difficult to engage as the course materials are not available in a format that is easily accessible. I want to caveat this with the Information that this situation is not due to a lack of time or self-advocacy but systems.

    I enrolled in November and was asked if I wanted the textbook and asked for an electronic textbook version which I was informed was available. Other participants were supplied with print copies. However, it wasn’t available in New Zealand and required contacting international Organisations. When I found out it was too close to Christmas, many places had shut down for the break.

    On my return to work, I asked the library if they could source me an electronic version, As I had no luck purchasing one. When they couldn’t, I approached the Blind And low Vision New Zealand (BLVNZ) Library, which had no copies.

    As the course Start date got closer, I tried more overseas sources; I pay for an Audible and Bookshare subscription which is US-based and supplies audio or e-book formats. I thought I had a good chance of getting the book from either of these. The common roadblock has been that it isn’t available in New Zealand. However, I had no success. I lived in the UK For a while and still have access to RNIB library electronic and audiobooks, so I searched these databases with no luck.

    By this time, the course had begun, so I ordered a print copy from Amazon, thinking I would make do. I soon discovered that on top of a full-time job and visually heavy daily tasks, reading a chapter a week and doing the associated coursework wasn’t feasible when it was in printed text.

    Some might suggest using a magnifying glass. This is a legitimate workaround; however, this takes time and causes slow reading with visual fatigue. Doing this extra visual work involves using my remaining vision and means I am faced with deciding whether self-improvement or saving my vision for work tasks is more important. Seeing my colleagues achieve Work and self-improvement concurrently can sometimes make me feel a sense of failure as someone who thrives on improving myself and the world around me; continually rationing what I can achieve after experiencing not having to ration my vision can be disheartening.

    Four weeks into the course, I have been contacted by an organisation that can record the book if I can send my print copy But the catch is there is a three-week time frame Meaning we would be at week six before I put fully engage with the same access to the resource that others have had since December.

    What I have learned is that there are services that can assist. However, these are not necessarily well-advertised or well-known. Furthermore, the lead times mean that in time-dependent situations, access to publishes electronic copies of things like this may be more beneficial.

    In the meantime, I have sourced another print copy of the book and with this, I can continue until the audio version is ready. What I’m grappling with is that by the time I get the audio version, we will be six weeks into the 12-week course. Is it worth my time and extra energy to use the print book or to save my vision for other related work tasks that need my attention? In other words, is the effort and fatigue worth it when I am already three weeks behind and using resources that are not fit for purpose?

    The example has illustrated the extra effort that having a disability brings to everyday tasks like picking up a book and reading it or, in this case, sourcing a book that others can quickly obtain.

    Reflecting on the situation has made me realise just how much extra and hidden effort it takes for someone with a disability to achieve personal improvement and everyday tasks like purchasing a book. Similarly, it shows how often I need to actively compare the amount of visual fatigue that a task will cause with what I will gain from from competing it. In this case, I will likely opt out of a professional development activity so that I can function to continue doing my day job.

    On some levels this feels like a failure, yet on another level it can be seen as self care. Regardless of the feelings, the above situation illustrates a very commonsituation for those of us who live with disability. This is that to access our society requires more effort, workarounds and adaptations particularly when access needs are not always considered at inception or design.

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