Posts Tagged disability

[ARTICLE] Seizures Do Not Affect Disability and Mortality Outcomes of Stroke: A Population-Based Study – Full Text

Abstract

Although seizures are frequently seen after cerebrovascular accidents, their effects on long-term outcome in stroke patients are still unknown. Therefore, the aim of this study was to investigate the relationship between post-stroke seizures and the risk of long-term disability and mortality in stroke patients. This study is part of a larger population-based study. All patients were prospectively followed up by a face-to-face interview or a structured telephone interview. We enrolled 635 patients with first-ever stroke and without a history of seizures. Prevalence of ischemic stroke (IS) was 85.2%, while the remaining 14.8% of patients were affected by intracerebral hemorrhage (ICH). During the study period, 51 subjects (8%) developed post-stroke seizures. Patients with post-stroke seizures were younger, had a higher prevalence of ICH, had a more severe stroke at admission, were more likely to have an IS involving the total anterior circulation, and were more likely to have a lobar ICH than patients without seizures. Moreover, subjects with seizures had more frequently hemorrhagic transformation after IS and cortical strokes. At 24 months, the risk of disability in patients with seizures was almost twice than in those without seizures. However, the negative effect of seizures disappeared in multivariate analysis. Kaplan-Meier survival curves at 12 years were not significantly different between patients with and without post-stroke seizures. Using the Cox multivariate analysis, age, NIHSS at admission, and pre-stroke mRS were independently associated with all-cause long-term mortality. In our sample, seizures did not impair long-term outcome in patients affected by cerebrovascular accidents. The not significant, slight difference in favor of a better survival for patients with seizures may be attributed to the slight age difference between the two groups.

1. Introduction

Seizures are frequently seen after cerebrovascular accidents. Acute symptomatic or early seizures (ES) affect between 3% and 6% of all stroke patients [1,2,3,4,5,6], whereas unprovoked or late seizures (LS) have been reported in 10 to 12% of stroke patients [7,8].
Although determinants and correlates of ES and LS after stroke have been largely investigated [1,6,9,10,11,12,13,14,15,16,17], the effect of seizures on long-term outcome in stroke patients is still unknown. In fact, previous studies focused their interest on short-term mortality [2,12,18,19,20,21,22], and only a few of them reported results on disability that was assessed only at discharge [13,18,19,21,22].
Recently, Claessens et al. conducted a retrospective study to explore a possible association between post-stroke seizures and long-term mortality. After correction for possible confounding variables, the authors concluded that seizures were not significantly related to mortality risk [23]. Conversely, in the prospective Future study, Arntz et al. showed that post-stroke seizures negatively affect long-term disability and mortality [24,25]. Differences in the population study might explain these conflicting findings. In particular, Claessens et al. included only patients with intracerebral hemorrhage (ICH), whereas Arntz et al. included only young patients, aged 18 to 50 years, after transient ischemic attack (TIA), ischemic stroke (IS) or ICH [23,24,25]. Bearing in mind that ICH accounts for almost 15% of all strokes and that cerebrovascular accidents are largely more common in subjects older than 50 years, these results cannot be directly generalizable to all stroke patients.
Therefore, the aim of this study was to investigate the relationship between post-stroke seizures and the risk of long-term disability and mortality in patients affected by cerebrovascular accidents.[…]

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[Abstract] A Preliminary Study of Dual-Task Training Using Virtual Reality: Influence on Walking and Balance in Chronic Poststroke Survivors

Abstract

BACKGROUND:

Stroke is a leading cause of death and disability in the Western world, and leads to impaired balance and mobility.

OBJECTIVE:

To investigate the feasibility of using a Virtual Reality-based dual task of an upper extremity while treadmill walking, to improve gait and functional balance performance of chronic poststroke survivors.

METHODS:

Twenty-two individuals chronic poststroke participated in the study, and were divided into 2 groups (each group performing an 8-session exercise program): 11 participated in dual-task walking (DTW), and the other 11 participated in single-task treadmill walking (TMW). The study was a randomized controlled trial, with assessors blinded to the participants’ allocated group. Measurements were conducted at pretest, post-test, and follow-up. Outcome measures included: the 10-m walking test (10 mW), Timed Up and Go (TUG), the Functional Reach Test (FRT), the Lateral Reach Test Left/Right (LRT-L/R); the Activities-specific Balance Confidence (ABC) scale, and the Berg Balance Scale(BBS).

RESULTS:

Improvements were observed in balance variables: BBS, FRT, LRT-L/R, (P < .01) favoring the DTW group; in gait variables: 10 mW time, also favoring the DTW group (P < .05); and the ABC scale (P < .01). No changes for interaction were observed in the TUG.

CONCLUSIONS:

The results of this study demonstrate the potential of VR-based DTW to improve walking and balance in people after stroke; thus, it is suggested to combine training sessions that require the performance of multiple tasks at the same time.

 

via A Preliminary Study of Dual-Task Training Using Virtual Reality: Influence on Walking and Balance in Chronic Poststroke Survivors. – PubMed – NCBI

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[WEB SITE] AI helps identify patients in need of advanced care for depression

Depression is a worldwide health predicament, affecting more than 300 million adults. It is considered the leading cause of disability and contributor to the overall global burden of disease. Detecting people in need of advanced depression care is crucial.

Now, a team of researchers at the Regenstrief Institute found a way to help clinicians detect and identify patients in need of advanced care for depression. The new method, which uses machine learning or artificial intelligence (AI), can help reduce the number of people who experience depressive symptoms that could potentially lead to suicide.

The World Health Organization (WHO) reports that close to 800,000 people die due to suicide each year, making it the leading cause of death among people between the ages of 15 and 29 years old.

Major depression is one of the most common mental illness worldwide. In the United States, an estimated 17.3 million adults had at least one major depressive episode, accounting to about 7.1 percent of all adults in the country.

Image Credit: Zapp2Photo / Shutterstock

Image Credit: Zapp2Photo / Shutterstock

Predicting patients who need treatment

The study, which was published in the Journal of Medical Internet Research, unveils a new way to determine patients who might need advanced care for depression. The decision model can predict who might need more treatment than what the primary care provider can offer.

Since some forms of depression are far more severe and need advanced care by certified medical health providers, knowing who is at risk is essential. But identifying these patients is very challenging. In line with this, the researchers formulated a method that scrutinizes a comprehensive range of patient-level diagnostic, behavioral, and demographic data, including past clinic visit history from a statewide health information.

Using the data, health care providers can now build a technique on properly predicting patients in need of advanced care. The machine learning algorithm combined both behavioral and clinical data from the statewide health information exchange, called the Indiana Network for Patient Care.

“Our goal was to build reproducible models that fit into clinical workflows,” Dr. Suranga N. Kasthurirathne, a research scientist at Regenstrief Institute, and study author said.

“This algorithm is unique because it provides actionable information to clinicians, helping them to identify which patients may be more at risk for adverse events from depression,” he added.

The researchers used the new model to train random forest decision models that can predict if there’s a need for advanced care among the overall patient population and those at higher risk of depression-related adverse events.

It’s important to consider making models that can fit different patient populations. This way, the health care provider has the option to choose the best screening approach he or she needs.

“We demonstrated the ability to predict the need for advanced care for depression across various patient populations with considerable predictive performance. These efforts can easily be integrated into existing hospital workflows,” the investigators wrote in the paper.

Identifying patients in need of advanced care is important

With the high number of people who have depression, one of the most important things to do is determine who are at a higher risk of potential adverse effects, including suicide.

Depression has different types, depending on the level of risk involved. For instance, people with mild depression forms may not need assistance and can recover faster. On the other hand, those who have severe depression may require advanced care aside from what primary care providers can offer.

They may need to undergo treatment such as medications and therapies to improve their condition. Hence, the new method can act like a preventive measure to reduce the incidence of adverse events related to the condition such as suicide.

More importantly, training health care teams to successfully identify patients with severe depression can help resolve the problem. With the proper application of the novel technique, many people with depression can be treated accordingly, reducing serious complications.

Depression signs and symptoms

Health care providers need to properly identify patients with depression. The common signs and symptoms of depression include feelings of hopelessness and helplessness, loss of interest in daily activities, sleep changes, irritability, anger, appetite changes, weight changes, self-loathing, loss of energy, problems in concentrating, reckless behavior, memory problems, and unexplained pains and aches.


Journal reference:

Suranga N Kasthurirathne, Paul G Biondich, Shaun J Grannis, Saptarshi Purkayastha, Joshua R Vest, Josette F Jones. (2019). Identification of Patients in Need of Advanced Care for Depression Using Data Extracted From a Statewide Health Information Exchange: A Machine Learning Approach. Journal of Medical Internet Research. https://www.jmir.org/2019/7/e13809/


via AI helps identify patients in need of advanced care for depression

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[Abstract] Design and Implementation of a Wearable Device for Motivating Patients With Upper and/or Lower Limb Disability Via Gaming and Home Rehabilitation

Abstract

Stroke survivors often suffer from a permanent or partial disability that restricts the movement of the hands, arms and/or legs. To help patients recover, rehabilitation should be at an earlier stage of the injury. Without motivation, it would be challenging for patients to successfully engage in the recovery process which can sometimes be painful of inconvenient. The application of wearable devices, games and Internet-of-Things (IoT) can create a motivating atmosphere to facilitate the rehabilitation process of patients while enabling remote monitoring of their health and progress. This paper presents the design and implementation of a rehabilitation system for aimed at helping stroke patients suffering from upper limb disability that exploits IoT by integrating gaming and wearable technology.

via Design and Implementation of a Wearable Device for Motivating Patients With Upper and/or Lower Limb Disability Via Gaming and Home Rehabilitation – IEEE Conference Publication

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[Abstract] The Work Disability Functional Assessment Battery (WD-FAB) – Physical Medicine and Rehabilitation Clinics

Abstract

Accuracy in measuring function related to one’s ability to work is central to public confidence in a work disability benefits system. In the United States, national disability programs are challenged to adjudicate millions of work disability claims each year in a timely and accurate manner. The Work Disability Functional Assessment Battery (WD-FAB) was developed to provide work disability agencies and other interested parties a comprehensive and efficient approach to profiling a person’s function related to their ability to work. The WD-FAB is grounded by the International Classification of Functioning, Disability, and Health conceptual framework.

 

via The Work Disability Functional Assessment Battery (WD-FAB) – Physical Medicine and Rehabilitation Clinics

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[Manual] ICF – International Classification of Functioning, Disability and Health – PDF File

1. Background

This volume contains the International Classification of Functioning, Disability and Health, known as ICF.1 The overall aim of the ICF classification is to provide a unified and standard language and framework for the description of health and health-related states. It defines components of health and some health-related components of well-being (such as education and labour). The domains contained in ICF can, therefore, be seen as health domains and healthrelated domains. These domains are described from the perspective of the body, the individual and society in two basic lists: (1) Body Functions and Structures; and (2) Activities and Participation. 2 As a classification, ICF systematically groups different domains3 for a person in a given health condition (e.g. what a person with a disease or disorder does do or can do). Functioning is an umbrella term encompassing all body functions, activities and participation; similarly, disability serves as an umbrella term for impairments, activity limitations or participation restrictions. ICF also lists environmental factors that interact with all these constructs. In this way, it enables the user to record useful profiles of individuals’ functioning, disability and health in various domains.

ICF belongs to the “family” of international classifications developed by the World Health Organization (WHO) for application to various aspects of health. The WHO family of international classifications provides a framework to code a wide range of information about health (e.g. diagnosis, functioning and disability, reasons for contact with health services) and uses a standardized common language permitting communication about health and health care across the world in various disciplines and sciences. […]

Download PDF File

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[NEWS] #SayTheWord ‘Disability,’ Rehab Psychologists Opine

disabilityAA

The authors of an editorial published recently in Rehabilitation Psychology challenge a trend toward erasure of the term “disability” in hopes to improve disability cultural competency.

“Attempts to avoid the use of the word ‘disability’ and couch discussions in positive terminology or euphemisms can have unintended consequences,” says Carrie Pilarski, PhD, an assistant professor of clinical psychology in the Michigan Medicine Department of Physical Medicine and Rehabilitation, in a media release from Michigan Medicine – University of Michigan.

“Avoiding the term reinforces the idea that disability is a negative or undesired state.”

While the term “disability” is widely used and universally accepted, often there are other terms substituted, such as “differently abled,” “special needs,” and “physically challenged.”

“People use these terms because they see them as accentuating the strengths of people with disabilities,” she adds. “But despite the good intention, these terms are euphemisms that deny recognition of disability as a valued aspect of diversity and identity.”

In the commentary, Pilarski and her co-authors analyze the history of disability language, attitudes around disability language and disability as an identity, to demonstrate why the term “disability” is an important part of disability culture.

While Pilarski notes that avoiding the term “disability” has the unintended consequence of reinforcing ideas that disability is negative, the authors also explain the harmful effects of focusing on individuals with disabilities as inspirational.

“We want readers to understand that there is such a thing as ‘inspiration porn’ and this serves to objectify individuals with disabilities for inspiration,” she shares. “We also discuss balancing using person-first and identity-first language to help support the recognition that disability is an aspect of identity.”

In addition, the authors discuss the role of social media in disability identity and social justices.

“Social media has truly invigorated the disability justice movement,” Pilarski continues, in the release. “There have been many viral hashtags for disability issues, such as #cripthevote, #iamapreexistingcondition and #thisiswhatdisabilitylookslike, that have helped not only with personal identity, but with highlighting the culture and recognizing the history of oppression, especially at a time when disability rights and services are being rolled back on a national level.”

A campaign created to reclaim the term “disability” is #SayTheWord, the authors continue.

“#SayTheWord was created by people with disabilities to claim the term disability as a valued aspect of diversity, support solidarity within the disability community, and encourage those without a disability to stop tiptoeing around the term and use it,” Pilarski says.

“This campaign is very much encouraging disabled people to reclaim our identities, our community and our pride.”

The #SayTheWord movement is also helping to highlight social injustices in the disability community, the authors note, in the commentary.

“We also discuss in the commentary the role of psychology in supporting the understanding of disability as an aspect of diversity with social justice implications similar to other marginalized groups, such as the Black Lives Matter movement and the Me Too movement,” Pilarski comments.

“We’re not trying to make comparisons or to equate experiences when we reference these other groups,” she says. “We’re saying that failure to recognize disability as an aspect of diversity, similar to other marginalized groups, also has unintended consequences of reducing supports available for individuals with disabilities and their formation of a positive disability identity.”

The authors hope their commentary sparks more conversation between the disability community and mainstream media and improves cultural competency.

“Being reflective and understanding the sociopolitical implications of language on disability serves as a call to action for clinicians, educators, and all disability allies to normalize the word ‘disability’ and challenge the stigma associated with it. We should speak out against offensive language and the tendency to replace the word disability with euphemisms or using disability for inspiration,” Pilarski shares.

“Psychologists and other providers or mentors should honor others’ language preference while opening up a dialogue about the underlying attitudes and beliefs that shape their preferred selection of terminology.

“We hope that future research can center on disabled voices in order to support solidarity in the disability community, pride in disability identity and activism for social justice with reclaiming equal access and rights in legislation and policies,” she concludes.

[Source(s): Michigan Medicine – University of Michigan, EurekAlert]

Source: #SayTheWord ‘Disability,’ Rehab Psychologists Opine


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[WEB SITE] Disability and fashion: the holy grail of a fashgasm

Disability and fashion: the holy grail of a fashgasm

We’ve all stared longingly at the glossy, perfect images in fashion magazines and wished we could look that stylish. But for us average Joes, and especially if you have a disability, the fashion industry doesn’t always cater for all shapes and sizes…

I’ll assume we are all friends here so I’ll just ask what’s been on my mind all morning – have any of you ever had a Fashgasm? I wasn’t sure this actually existed, but after a quick Google search it would appear that people are having them all over the place!

I woke up this morning to the sound of cellophane being pushed and rustled through my letterbox – my latest issue of Vanity Fair magazine had arrived. Now I’m sure most people are aware of the subject matter of this magazine, but those of you who don’t, I shall elaborate. Vanity Fair is a high-end fashion magazine that blends articles of culture, business and style with an acute awareness of the ebbs and flows of the modern world.

Mix all this with an array of advertisement delights aiming the spotlight towards designer fashion that would lead to most couture conscious ladies to have what I have decided to call a Fashgasm (I’ll let you decipher what that means!). But I promise you I read it for the articles… I just haven’t gotten round to reading them yet!

Now I’m sure most people allow their minds to wander into a fantasy land picturing the endless possibilities life could offer if only we could own the dresses and shoes and have the flawless skin being offered to us on that glossy A4 plate. However, it was during this cerebral escapism that I realised: the food source upon the aforementioned plate is most definitely the stuff of dreams. It just won’t come true, which is maybe the shared reality of many a person who has a disability just as I do.

I am 27 years old and have a neuro muscular condition called Spinal Muscular Atrophy, which means my frame is extremely skinny due to muscles wasting, I have a severe curvature of the spine and I use a wheelchair for mobility.

The nature of my disability has made it near impossible to find fashionable clothes that I both like and that are comfortable enough to accommodate sitting down for long periods of time and do not irritate the skin by means of creases, buttons or ruffles of fabrics.

Catwalk models in wheelchairs 

 

Before writing this article I conducted research into websites that claim to offer adapted clothing for people with disabilities. I have to say that my findings were uninspiring to put it politely! Unless I want to dress like a granny from the Shreddies advert, or suddenly develop an overwhelming desire to wear buttoned underwear, then I am basically screwed!

This then leads me to the high street. I tend to try to keep it simple – I say try – I HAVE to keep it simple because the type of clothes I’d love to buy just aren’t available in my size. For someone who is often reduced to ordering kids sizes in clothes, I want it to be well known that I don’t want to wear giant cat’s faces or One Direction across my tops. It just doesn’t float my boat!

Then changing the subject completely, it proves almost as difficult to find nice underwear that fits and doesn’t look as boring as watching paint dry. I have never been able to find fancy, feminine underwear to fit my frame, however, on the bright side I will never need the use of a pair of Bridget Jones either. I will have to weigh up the pros and cons of this problem carefully and get back to you.

Like I said, simplicity seems to be my only option. I have been told that I have a trademark look of jeans and vest top, which is very often accompanied by a black mesh top underneath. It might not make the feature pages of Vanity Fair, but it works for me. And if I could give you one piece of advice it would be to invest in a pair of jeans that you love and, most importantly, find comfortable.

I should probably point out that the mesh top stems from a Goth phase that has never quite left me – and probably never will much to the amusement of friends and family alike.

There is probably an entire article in the difficulty of trying to buy clothes associated with different sub cultures, but there is not enough room here to include that full rant. And for those of you wondering how someone can be simultaneously interested in Vanity Fair and the Goth sub-culture I say; don’t question it, I just live it.

But anyway, I digress. I still find it hard to believe that the fashion industry has yet to cater for people with disabilities in a time when Danielle Sheypuk is the first disabled model to roll down the catwalk at designer Carrie Hammer’s fashion show at New York Fashion Week in 2014. I hope that the problems we face will soon be eradicated and that one day the pages of my Vanity Fair will reflect these changes.

By Hayleigh Barclay

 

via Disability and fashion: the holy grail of a fashgasm | Disability Horizons

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[BLOG POST] “Can you have sex?” and other common disability and dating questions

We all know that there are a number of preconceptions about disability. One of the biggest is around dating – some people still don’t believe that disabled people date, have relationships and, yes, have sex! For a different perspective on the topic, we’re sharing a blog post from Becky, who isn’t disabled herself but is dating wheelchair-user Dan. Read on to find out how she deals with misconceptions about disability, and her answers to people’s common questions. 

Hi! I’m Becky. I’m a pretty average 23-year-old from the West Midlands. I’ve been a registered veterinary nurse for the last four years and have my own furry clan of horses, a dog and a cat. I’m happiest when I’m outdoors with my animals or exploring with Dan and my friends.

Dan (my better half, significant other, partner in crime….) is 28 and works as a data analyst. He’s a big music fan so loves going to gigs. Like me, he’s always busy and enjoys it being that way.

Dan has Friedreich’s Ataxia, which is a rare genetic, degenerative disease that causes coordination problems, a loss of sensation in the arms and legs, and impaired speech. As a result of this, Dan is a wheelchair user.

From the moment that Dan and I started dating, people have asked me what it’s like to date someone who has a disability. I use my blog, Head over Wheels, to answer their questions, and to share our reviews and stories about places we visit and their accessibility.

Here’s my post on some of the big questions people have…

“What’s it like dating someone in a wheelchair?”

This isn’t hugely different from asking: “What’s it like dating someone called Dan?” The obvious answer is, well, no two men called Dan are the same. Everyone is different.

Ok, so accessibility needs to be considered when dating any wheelchair user. But even that aspect differs from person to person. The rest is just like going out with someone who doesn’t have a disability; first date nerves, worries about awkward silences, excitement if you get on, the fluttery chest if you fancy them.

According to the charity Scope, two-thirds of Brits say they feel awkward around disability, and some people feel so awkward that they avoid disabled people altogether. That really needs to change!

When I was younger, my grandparents worked at a day centre for people with disabilities and learning difficulties. I occasionally spent time with them there and went to a few of their summer fetes and fundraising events.

I think that that helped to shape my attitude towards disability from a young age. I’m also used to working closely with people who have disabilities as I have treated several guide dogs and assistance dogs in my job as a registered veterinary nurse.

As I was getting ready for my first date with Dan, I’ll admit, I did start to feel anxious. I’d be lying if I said I wasn’t thinking about his disability at all. I wasn’t sure whether to ask him more about his ataxia, or not to approach it at all. I didn’t want to unintentionally say or do the wrong thing.

But honestly, within the first 10 minutes of our date, all my worries had dissolved. I got completely wrapped up in the easy conversation and Dan’s charm – the wheelchair and his disability became insignificant.

Becky and Dan

“How much do you have to help him? Do you have to push his wheelchair?”

I didn’t have to help Dan at all on our first date. He suggested where we should meet, which meant that he knew what the access there was like. Dan put it bluntly on his dating profile bio: “I’m not looking for a carer, I have my independence.” He drives, has his own place, and works full time.

For our first date, we met at the café and bar at Ikon Gallery in Birmingham. When I arrived, Dan asked what I wanted to drink, then said he’d go in to get it for me. I sat at the table outside wondering how he was going to manage to carry it over. A few minutes later he came back out with a waitress who was carrying my drink.

Knowing that he couldn’t carry it back himself, he easily could’ve sent me to get my own drink, but he didn’t. It might seem like a trivial thing for me to mention, but I think it shows what sort of attitude Dan has.

There are some things that I have to help him with, but he also has to help me out too (like by reaching stuff from the top shelves in the kitchen cupboards! Yes, he can stand…!).

“Will you still be able to experience dating ‘normally’ and fully? Will you miss out or have to make any sacrifices if you’re dating someone with a disability?”

Our first date lasted four and a half hours! Considering that I’ve had more than one first date that didn’t even last an hour, I think that speaks volumes. I’d never clicked so well with someone the first time I’d met them.

After a drink at the café and having a looked around the Ikon Gallery, we went for a drink at a bar in Brindley Place. Even after that, we hadn’t had enough, so we went for dinner.

When I met Dan I was getting my life back after being in an abusive relationship. I was enjoying dating and meeting new people. For a few years, I’d missed out on a lot due to being in a toxic relationship and struggling with anxiety. People close to me just wanted to make sure that I didn’t miss out on anything else, hence this question.

A few months after the end of that relationship, I developed a new-found zest for life. I decided that whenever and wherever possible, I was only going to spend time with people whose company I genuinely enjoyed. I realised I had a lot of making up to do, places I wanted to visit and things I wanted to see.

Dan is honestly the funniest, most determined, and kindest person I’ve met. Within the first couple of months of dating, I’d been out-and-about and had more fun and laughter than I’d had in a really long time. It was quite the opposite of having to ‘make any sacrifices’. He’s brought so much to my life. Ew, gushy.

For just one example of what we’ve been up to so far, you can read my Zip World post.

Becky sitting on Dan's lap in his wheelchair in front of a fountain

“Can you have sex?”

I spent a long time pondering over whether or not to include this in my blog. Initially, I was uncomfortable with putting the blog online at all. So I’m sure you can imagine how I felt about answering this question!

But, the purpose of my blog is to be open and honest, and to address any stigmas. Plus, people really do seem intrigued. So much so that Dan felt the need to mention it in his dating profile – at the end of his bio, he simply put: “And it works…”

So… the answer is yes, we can. And we do.

Dan was the first one to broach the subject when we started dating. He anxiously told me his concerns, and I told him mine. Of course, it’s a bit of an awkward and embarrassing conversation to have when you’re in the early stages of dating. But we both had ‘baggage’ so it was important that we talked about it.

At the time, I was having treatment for post-traumatic stress disorder (PTSD) and was dubious about opening up to Dan. When you’ve been in an abusive relationship, or if you have a disability, sex can be a much bigger deal than it is for a lot of people.

However, there was no pressure from either side, and luckily we were both on the same page. We agreed that we just had to figure out what works for us both.  It wasn’t easy at the beginning, but sex wasn’t a deal breaker for us. Controversial? But maybe more common than you might think.

There’s a huge list of physical and psychological reasons why sex might be either a problem or just not be that important to someone. We’re all different, and having a disability definitely doesn’t automatically mean that someone doesn’t have a sex life (I can guarantee!). Likewise, being ‘able-bodied’ doesn’t mean your sex life should be amazing and massively active.

Dan and I have found our patience and honesty with each other to be totally worthwhile. So, to summarise, dating someone with a disability doesn’t mean that I’m missing out on anything at all. In Dan, I’ve gained my other half and my best friend.

Oh, also, his wheelchair and lap provide a pretty useful portable seat for when I’m waiting in queues. And I mustn’t forget the parking spaces.

In an attempt to help #EndTheAwkward, I’m happy to answer any other burning questions you might have! Just leave them in the comments section of this article.

By Becky – read more of Becky’s posts on her blog Head over Wheels.

via “Can you have sex?” and other common disability and dating questions

 

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[WEB SITE] Robots and the Future of Disability and Accessible Technology – Videos

Will We Be Cyborgs? Robots and the Future of Disability

Robots are in the news a lot these days, especially robots for people with disabilities. In Japan, a recently-opened café hired people with disabilities to operate robotic servers that take orders and bring food. The futuristic dining experience brings in customers while also providing valuable jobs to people who would otherwise be unemployed.

When I heard about this café, I was reminded of the movie “Surrogates,” in which humans live their lives through robotic bodies that were originally developed for people with disabilities. The film presents a dystopian view of such a world, depicting most people eschewing their physical bodies for a “safe” robotic existence. (Spoiler alert!) The villain was angered when able-bodied people started using the technology and sought to destroy it to force people to connect in the “real world” again. The film ends with this goal achieved, many lives saved and the people with disabilities who needed the technology forgotten and isolated again.

Could Robots Bring Us Closer Together?

If the plethora of “robots gone bad” movies is any indication, humans tend to fear that relying on robots or connecting to robots separates us further from each other. On one level I share those concerns, but what about the people who are currently excluded from various aspects of society because they aren’t able to physically interact in the same way as others? The cafe robots open new opportunities for physically disabled people to do a job most of us would otherwise be unable to perform. They also allow their operators to care for others, which has both practical and emotional significance for people who have needed more physical care than they could give in return. Robots could enable not just independence, but interdependence. Under the control of a person with a disability, a robot might not only help them dress but cook their spouse’s favorite meal and set the table for a romantic evening.

Unfortunately, the concept of a person with a disability controlling their robot and its actions is largely absent from most of the “care bots” currently being developed. Instead, they are designed to operate independently and offer activities such as social interaction, as well as health checks and reminders. It’s great that these technologies (as well as devices many of us already have in our homes like Siri and Alexa) can help with medication reminders and be used to call for help if someone falls or becomes ill. However, there is a line between empowerment and control, and it’s already been crossed in some disturbing ways. For example, there’s an FDA-approved pill that sends a digital alert to the patient’s doctor after it has been taken, and many sleep apneadevices monitor how long they’ve been used. People who don’t meet certain requirements face a loss of insurance coverage, even if there was a perfectly reasonable explanation for not using the technology. In the United States, a new law mandating electronic visit verification has been used in some states to GPS track people with disabilities and our caregivers, sending up alerts if the caregiver checks in at a “non-approved” location.

A subplot in the TV show “Humans,” which depicts a world with humanoid robots known as synths, takes this kind of surveillance to its terrifying but logical conclusion. An elderly man is told he must trade in his aging but beloved synthetic caregiver for a new model, as both are paid for by Britain’s National Health Service. When he asks the new model to cook his favorite meal, the robot refuses, stating that the fat and salt content exceed his doctor’s recommendations. In various creepy scenes, the robot controls his actions and restricts his life on the grounds of it being for his own good. To me, this storyline was more terrifying than any “Terminator” movie, because I already see the signs it could become reality for millions of seniors and people with disabilities.

Sex Robots Aren’t the Answer

Many robot development projects seem to focus on companionship, the idea that people with disabilities are lonely. They try to develop robots who act like people, instead of looking at the reasons why non-disabled humans aren’t including disabled humans. Concerns about loneliness and disability also inevitably come up when people start talking about sex robots. There are articles that express concern sex robots will further isolate humans from each other and give them unrealistic expectations for a human partner, but they’re far too quick to throw these worries out the window when it comes to people with disabilities. They’ll say things like “sex robots are mostly bad, but we need them for people with disabilities.” This implies people with disabilities can’t have a “normal” relationship, which is both inaccurate and offensive. No human would want us, so we should just settle for a robot?

To be clear, there’s a real need for more accessible sex toys and for technology to enable people with disabilities to enjoy sex regardless of physical limitations. However, many of the barriers people with disabilities face when it comes to healthy sexuality and relationships are not physical. They are social and cultural. While no individual is entitled to a relationship with another individual, people with disabilities as a group have the right to be seen as appealing potential partners, and to be judged on our personal merits, not our disabilities. The solution to loneliness among people with disabilities is to fight the stereotypes that lead to people not wanting to hire us, befriend us and date us, not create an artificial human that would do all those things but without any real emotion. That’s why I believe the real danger of AI isn’t Skynet-style world domination, but that society will make judgments about who is worthy of real human interaction and who isn’t.

Will We Be Cyborgs?

I believe it’s essential for people with disabilities to get involved with the development of new robotic technology, so it can be built “by us, for us” and empower us to be full participants in society. I’ve long been fascinated by Hugh Herr, a mountain climber turned MIT professor doing pioneering work in robotics and cybernetics. Herr lost both of his lower legs due to frostbite after a climbing accident but was determined to return to the sport he loved. After years of not caring much about school, he enrolled in college and began designing his own prosthetic legs, which he found actually gave him an advantage as he could change his feet to adapt to various terrains. Today, he develops advanced bionic limbs and is doing pioneering research in cybernetics.

Herr and his team recently created a cyborg. That word may bring up terrifying visions of alien hordes coming to “assimilate” humanity, but in our reality, he gave an amputee his leg back. The new technology maps a prosthetic leg’s movement to the nerves in what remains of the amputee’s leg, so his new foot moves just like his old one did — without him having to think about it. This is mind-blowing stuff. The team is also developing exoskeletons which could enable people with muscle weakness to walk and enhance the strength of able-bodied people. I wonder if such technology could eventually “unscramble” the incorrect neural signals of people like me who have brain damage from cerebral palsy or a stroke, enabling us to walk with an exoskeleton.

An End to Disability?

Some might be put off by Herr’s goal of an “end to disability,” and I also have concerns with that wording. Disability is part of being human, and people with disabilities will probably always exist, even if or when science finds a cure for certain diseases. Disability isn’t inherently bad, and the way society treats us often limits us more than our conditions.

But the “end” Herr proposes is vastly different from technologies like genetic engineering that would eradicate disability through erasure. Bionic technology validates the humanity of people with disabilities, views us as deserving of inclusion in society, and can transform us while retaining our uniqueness. It preserves our agency and gives us the opportunity to not only exist on a physically equal playing field, but a more advanced one. Bionic bodies will be able to move in ways those who are purely organic cannot. In the future, we may see dances that can only be performed with prosthetic limbs, bionic sports teams and vehicles controlled by nerve impulses. Mechanical parts would be integrated into our self-concept, a process Herr calls “neurological embodiment.”

Would neurological embodiment cause us to lose our humanity? Herr doesn’t seem to think so, and I don’t either. As a wheelchair user, I experience neurological embodiment every day. Although I can’t control my wheelchair with nerve impulses, on a psychological level it feels like part of my body, an extension of my self. I’ve heard many other wheelchair users say the same thing.

My neurological embodiment was further enhanced when I became a cyborg myself — though I never thought of it that way until I watched Herr’s TED Talk. Several months ago I got a standing wheelchair, which helps me not only stand, but bend to reach items, elevate to sit at a bar table, and so much more. It’s an amazing piece of technology, like a cross between a Transformer and an exoskeleton on wheels. I knew it would help with practical matters, but I never expected how much it would change the way I relate to other people, and the way people see me. When I talk to people at eye level or get out on the dance floor, it feels more real, more natural. Nothing comes between us physically or psychologically, and I no longer feel like an outsider. It seems like people don’t notice my wheelchair as much, and when they do, their comments are positive. They see me as a person enabled by a cool piece of tech, not an object of pity.

Our Bodies, Our Choice

Sometimes my wheelchair moves in a way that feels natural, but other times I’m acutely aware of its limitations. Interestingly, many of those limitations are not inherent to the system but programmed by the manufacturer for my supposed safety. For example, the wheelchair will only operate at a very slow speed while standing, so I can’t roll along next to someone who is walking without them having to slow down. I can’t spin around on the dance floor quickly unless I go back to a fully seated and lowered position. It’s both liberating and frustrating at the same time.

Unfortunately, many companies that develop products for people with disabilities do not presume competence. They treat us as if we are not capable of making smart decisions about our mobility devices, and design for the lowest common denominator. They put safety over freedom, which may seem wise but can put unreasonable restrictions on our bodily autonomy. Non-disabled people have the right to take risks with their bodies — why don’t we? I shouldn’t be limited from spinning on the dance floor or “walking” beside a friend indoors just because going down a steep ramp while standing would be dangerous. People with disabilities should be taught how to use technology safely, just like people without disabilities are taught to use their bodies safely.

New Future, Same Challenges

I imagine the future of cybernetics as a spectrum, ranging from people who use technology for physical and cosmetic enhancements, to those who have replacement or repaired body parts, to those whose bodies are entirely mapped to a piece of technology and their “Surrogate”-style robot walks through the world as they remain in bed. Such mapping would also surely translate to the digital world, where virtual reality bodies defy all physical limitations. As an avid user of the virtual reality platform Second Life, I’ve experienced a taste of this and can attest that friendships formed through digital bodies continue into the real world. I see all of this as opening more opportunities for people with disabilities, especially those who are currently homebound due to severe muscle weakness, chronic fatigue, and/or complete paralysis.

Unfortunately, the greatest barrier to adoption of whatever new technologies come along is already readily apparent — money, and the broken American health care system. Currently, amputees struggle to get funding for more than the most basic prostheses, and people who need power wheelchairs and other advanced mobility technology are often denied insurance coverage. Many promising products never make it to market or fail because insurance doesn’t cover them. Remember the iBot? It went under after almost no one could get funding to buy one, and although Toyota has now acquired the technology, they only seem interested in using it for marketing purposes. My guess is they discovered how grueling the FDA’s medical device approval process is and that no insurance would pay, and decided to stick to cars.

I have three forms of health insurance, but it still took a year of fighting and extra funding from the state Vocational Rehabilitation program to get my standing wheelchair. And what about when things go wrong? A crucial part of my wheelchair just broke for the second time in less than a year, and of course, insurance doesn’t want to cover the cost. As technology becomes more integrated with our bodies, its failure will increasingly mean the loss of someone’s mobility and possibly even their life.

We don’t need machines to love us. We need them to empower us to live freely in the world so we can love and be loved by other human beings. We need a health care system that recognizes the value of technology and gives us the funding and support we need to thrive. That’s a future I hope to see.

 

via Robots and the Future of Disability and Accessible Technology | The Mighty

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