Cultures of Inclusion

As we move into a society where creating cultures of inclusion for people with disabilitiescultures of inclusion becomes more and more important, administration of social institutions in particular need to remember two words: top-down.  It’s all about creating cultures of inclusion that start from the very top of the organizational hierarchy and pervade the entire organization, touching the person at the very bottom of the hierarchy.

*Your* Part in Creating Cultures of Inclusion

“You set the tone,” Dr. Greene (Anthony Edwards) said to young Dr. Carter (Noah Wyle) in the opening episode of the long-running “ER” series. This is true. We do set an example for others by how we interact with people with disabilities in all areas of life: at work, church, on the street, in the grocery store, at our kids’ hockey games, in PTA meetings…wherever we are. Chances are that if you’re in a group, someone there has some sort of disability, even if it isn’t visible.

Management’s Part in Creating Cultures of Inclusion

In organizations, though, management has an extra responsibility to “set the tone”. The phrase “culture of inclusion” describes an atmosphere where the staff in organizations and the people that they serve are comfortable with the fact that people are different and where people are treated with respect and dignity, as full community members, despite their differences. Good managers are aware of the legislation surrounding disabilities and hiring practices and know the advantages of having a diverse staff.  When managers embrace the ideals of cultures of inclusion, it filters down in their policies, the day-to-day of the organization, and the way the organization, whether profit or non-profit, serves the community.

Schools and Cultures of Inclusion

School administrations in particular can have a powerful effect by creating cultures of inclusion among students. Special education programs have been hit hard with budget cuts, and many students who would have had classroom Educational Assistant support in the past will not get it now. But perhaps this will spur educators to think outside the box about the nature of supports that students actually need:

  • Given the intensity level, frequency and duration of support that a student needs (not to mention what subjects interest them and what they’d like to do after graduating!), do they really need an EA?
  • If the student has an intellectual disability and is low-functioning (for lack of a better word), are there some classes that might interest them as an observer? A music class? A gym class?
  • Could volunteer students from the school go with some of the students in segregated special education classes to noon hour events?

Everyone can benefit from seeing students with disabilities participate in school events, and students with disabilities, especially those in segregated special education classrooms, often welcome the opportunities to meet other students and make new friends. In some schools, there isn’t much of a chance for anyone to get to know students in segregated classrooms, and that doesn’t promote cultures of inclusion.  Positive relationships with people with disabilities as children and young adults is going to carry over into adulthood for students without disabilities. Also, these relationships enrich the lives of people with disabilities. Particularly for people with intellectual disabilities, they’re an opportunity to try new things and learn valuable interpersonal skills. It’s very important that school administrators create opportunities for these relationships to happen.

Even cultures of inclusion that seems forced at first can develop into something more organic and spontaneous, and can benefit everyone.  Read about the Heads Up for Inclusion project, which focused on developing cultures of inclusion in several Ontario schools:

http://www.headsupforinclusion.ca/index.php?option=com_content&view=article&id=3&Itemid=5

So, managers, remember…top-down! *You* set the tone for your organization when it comes to how people with disabilities are treated.  Set a good one.

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Could Disability Happen to You?

I once heard a comedian/disability advocate introduce himself at the beginning of one of his shows as “not disabled yet.” Nicely played, I thought.  Because while disability isn’t inevitable for everyone,  there’s a good chance that for many people, age (if not circumstance) is eventually going bring some sort of disability.

We just don’t like to think about it until it happens. And when it does, the world starts to look much differently than it did.

“It Could Never Happen to Me”

I learned from the Human Development Course that I took a few years ago that part of the reason that teenagers engage in risky behaviour is that they think that they’re invincible. I submit that part of us never stops thinking this way. We never consider that we could someday have to use a wheelchair to get around, or use disabled parking, or have to rely on social assistance because a disability prevents us from working.

Until it happens. And then it becomes startlingly clear just how difficult it can be to get around even spaces that are “accessible”;how few the disabled parking spaces are (especially when people without passes use them when they’re just going to “run in” to the store); how fiercely people feel about tax dollars going to monthly income support for people that genuinely can’t work because of disability that doesn’t even allow them to meet the poverty line.

Why Disability Could Happen to You

One of the men at at Ottawa Rehabilitation Centre had a spinal cord injury that had left him a paraplegic. He was fairly young, mid-thirties at the most. The cause of his injury hadn’t been dramatic. He’d been on an all-terrain vehicle, going about ten miles an hour.  The ATV had hit a rock in the trail, and flipped. He’d hit his spine.

It’s that easy and unexpected.

Even a bad fall could do it. When my father broke his arm after a fall in the woods, he got an uncomfortable taste of what it was like to live one-handed (which, as much as I’m used to it now, can be decidedly inconvenient).

My Point

My point is…it’s easy to ignore disability issues because they don’t affect us in the moment. I was guilty of it myself. But if we’re committed to building a society where everyone feels valued and every life has dignity, we’ve got to try to put ourselves in other peoples’ shoes and see things from their perspective – not just say “but for the grace of God…” and move on.

What other groups should we be doing this with, do you think?

 

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I Support the Spartacus Report

http://diaryofabenefitscrounger.blogspot.com/2012/01/i-support-spartacus-report.html

Disability advocate Sue Marsh put this report together, with the help and support of other people with disabilities in the UK. It brings to light some disturbing information about the direction that income support for people with disability is going in the UK, and the process by which the government made these reforms.  One of the blogs that I looked at said that people are already dying because of these reforms.

I have to admit that I only have a passing knowledge of what’s been going on in the UK, and that I didn’t know about this report until today. But I have friends with disabilities in the UK, and wanted to show my support. I fear that a similar situation could someday happen in the United States, or even Canada.

If you live in the UK, please sign the petition at the bottom of the linked page…thanks.

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Information Accessibility – Information for Everybody

Information accessibility issues get very little, if any, attention.information accessibility

Information Accessibility

We’re all familiar with physical accessibility issues, and we’re becoming more familiar with accessibility issues around hearing impairments, visual impairments, and even web design accessibility. But we’re only starting to learn, it seems about making information accessible (which can use elements of all other types of accessibility).

Let’s look at this example: Getting information about the Ontario Disability Support Program

  • Even finding the phone number in a phone book would be too much for some of highest-functioning (for lack of a better term) people with intellectual disabilities that I’ve supported to find without some assistance.
  • The voice mail system at ODSP makes you key in an extension based on the first letter of your last name. You have to listen carefully, because the letters are not presented sequentially (for example, you may have to key in a certain extension if your last name starts with A-L, Q, T, X or Z). Most times, the call goes directly to voice mail.
  • ODSP does have a web site, but it’s confusing to use and provides limited information on the program. You are referred to your local office, which can be difficult for people to ascertain.
It’s confusing even for people without intellectual disabilities.  It’s not good “information architecture”, as they say in the technical writing world. Depending where you are, other factors make the information even more difficult to access.

Different Region, Different Information Accessibility Needs

I remember going to quarterly regional meetings of the transition program in which I once worked, hearing about the fabulous things that everyone else was doing, and thinking, “That just won’t work where we are.” I wasn’t trying to be negative. I just saw us facing different access challenges, as a very small town, than the people from larger centres did: no public transportation, lower literacy rates, fewer people with internet access in the home…it affected the way families that I supported understood their options for their children once they graduated, and often it meant an intensive level of support for some students and families. I felt like we did things differently than the programs in the larger centres, out of necessity, because needs of students and families were different.

Those Darn Assumptions

Which isn’t necessarily bad.  But there are assumptions out there now that *everyone* has internet access and knows how to use it effectively. A number of factors may make this simply not true, and it keeps people (and not just people with intellectual disabilities…if I’m having trouble getting what I need from a government website, then other people are people are as well) from getting information that 1) they’re entitled to and 2) that they need.

It creates inequalities, and therefore needs to be addressed, whether it’s through providing more support to assist people to understand information to or restructuring information architecture so that it makes information more accessible and understandable…or both.

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My Brain AVM Story: Michael

This is another essay from my book “Run, Run Because You Can”. It’s a little long, but it’s a reader favourite. I hope that you enjoy it.

Michael

Some people that I met during in-patient rehabilitation were part of  my  post-stroke life for only a very brief time, but impacted me greatly. Michael was one of them.  He came to Penetanguishene General about six weeks into my stay. He’d also had a stroke that had affected his dominant side.

Michael was in his sixties. I didn’t hear him speak for several days after he arrived.  His wife was with him whenever possible, and for the first couple of days I mistook his quiet for terror.  He actually couldn’t speak, as his stroke had severely affected his speech as well as his mobility. I was again reminded to count my blessings.

Due to the nature of Michael’s stroke, his recovery process moved much faster than mine. However, it also worked in his favour that he worked even harder at rehabilitation than I did (andbrain avm I was working pretty damn hard). He had the best attitude that I saw in anyone, in all my time in rehabilitation. Before long, he could give one-word responses to questions such as “How are you?” (to which he always gave an emphatic “Excellent!”). He was soon talking in short, halting sentences when his wife came to the hospital to have dinner with him. He did his physiotherapy and occupational therapy exercises diligently and without complaint. When the physiotherapists gave him the “okay” to walk short distances with a cane, he would practice even after daily therapy hours were over, until the nurses would make him stop. His determination renewed mine, and made me want to work even harder than I was.

Kindred Spirits

Sometimes we were in the Occupational Therapy room at the same time.  He did worksheets while I did my arm exercises. One day, another patient was complaining that Jim, one of the physiotherapists, was in a terrible mood. I was struck (not for the first time) that someone was always complaining about something on that floor, and I tried to hide my annoyance.

“He’s probably just having a rough morning,” I sighed as I did a set of reps with the eight-pound weights, using my right wrist. Part of my therapy was to strengthen my right arm in preparation for making it my dominant arm. Being able to lift eight pounds with your wrist is pretty good. Normally, I’d have been very proud to be able to do that. However, it just didn’t seem very impressive that morning.

brain avm“Jim’s. Hung. Over.” said Michael, and winked at me.  Due to his speech difficulties, when he spoke, he had to pause between each word for a short period. That time it didn’t even register; the words were so unexpected and yet so perfectly timed that I’d started to giggle before I could stop myself.

Once I started giggling, I couldn’t stop.  The morning suddenly looked a little less gloomy. Ellen, the occupational therapist, looked over at me to see what so funny, but I couldn’t explain myself, and I didn’t really feel like it anyway. When I looked over at Michael, he was grinning, and I thought, I like this guy.

Another time, as I laboured to stack cups using my left hand, Michael started looking to me for help with his memory worksheet. He was stuck on a grammar exercise.  Thinking back to how difficult it was for him to retrieve words, and how he sometimes got different elements of speech mixed up, I am so grateful that most of the machinery for that sort of thing is on the opposite side of my head from where I bled.

“Take. This….” he read from the sheet. He was to supply a noun.

“Take this…” I wrinkled up my face, hoping that maybe if I thought hard enough, my hand would work and I could stack the plastic cups effortlessly.

“Take. This. And. Shove. It.” said Michael.

I nodded. He’d pretty much summed it up. I suddenly felt a kinship with Michael, perhaps just based on a mutual frustration (and perhaps boredom) with occupational therapy exercises, but a kinship nonetheless. A little while later, during our one, real conversation, I realized that there was perhaps a deeper bond of understanding behind it.

“I. Love. My. Life.

We were both sitting on the porch between physiotherapy sessions. The other people with whom we’d been talking had gone back inside. We were sitting out in our wheelchairs in comfortable silence, enjoying the sunny day. PGH was a nice hospital, on a scenic piece of property. I could almost believe that I was out in the country when I looked off the porch at the surrounding trees.

At length, I started asking Michael about his life outside the hospital. He talked, in his slow, halting speech, about his wife (who still came daily to have dinner with him), his children, and his grandchildren. He talked about how worked in a bank for most of his career, and about how much he now enjoyed doing things outside now that he was retired from his job. He particularly enjoyed snowmobiling.

After a while, he became silent. He stopped looking at me and appeared to be biting his lip.  It took me a moment to realize that he was trying not to cry. I suddenly felt very, very badly. I’d only been trying to make conversation, but obviously I’d hit a nerve. I knew which one was it was, too. When hit it the right way, it was a sharp, stinging reminder that just a little bit of blood where it shouldn’t be could turn your world upside down and change it forever.

“I. Love. My. Life.” he said softly.  “I. Love. My. Life.”

Yes, I said to myself, looking at my hands.

He quickly turned his wheelchair away from the railing and started to roll towards the door. Halfway there, he broke down and started to sob.

My heart was breaking. I rolled toward him in my chair, absolutely clueless as to what I was going to say or do, but feeling like I needed to do something to let him know that I understood. I had my hand reached out to put it on his shoulder, but as I got close to him, he grabbed my hand and brain avmsqueezed like he was never going to let go.

In that instant, I felt as if I’d found my rehab soulmate. I felt like someone understood how hard it was to get up every day and be positive, work very hard and just be generally “excellent” when there seems to little to feel good about.

One of the hardest parts of rehabilitation was that I just didn’t know what was going to happen. I had to go put as much into process as I could, with no guarantee of how much of my old life I was going to get back. It was exhausting and terrifying…and up until that moment, I’d been feeling very alone in those feelings, despite being surrounded by support.

All this passed through my mind in an instant, as did the sudden certainty that I was not alone in these uncomfortable feelings. To know this so deeply brought tears to my own eyes.

Michael only held my hand a couple of seconds, and said nothing. He then let go, wiped his eyes, and wheeled towards the door to go in for lunch. I might have met up with him a couple more times in occupational therapy after that, but we never spoke of that day on that porch, and it wasn’t long before he was walking out of the hospital with his wife for good.

Sometimes, when I see people snowmobiling, I wonder if he’s out on the trails. I like to think that he is.

 

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Rick Santorum Misses Taking Iowa Caucus by 8 Votes

After my nightly viewing of “Big Bang Theory” last night, I turned to CNN to see howrick santorum things were going over in Iowa.  I was very uncomfortable to see that the CNN entrance poll placed Rick Santorum in the top three.

For those that don’t remember why the prospect of Rick Santorum as President both disgusts me and scares the hell out of  me, see my previous post about him:  http://www.girlwiththecane.com/rick-santorum/

Rick Santorum for the Win??

Discomfort turned to mild fear as the first precincts started reporting Santorum as coming in first. The cursing started when Ron Paul dropped to third overall and Santorum and Mitt Romney began to duke it out. I was a wreck during the last few hours when Santorum was in first place, with so few votes separating him from Romney.

And then, at the last moment, Romney took the caucus by eight votes, and I breathed a huge sigh of relief. But I never dreamed that Rick Santorum would come so close to winning. It scares me.

Same Stuff, Different Speech

I read the text of Santorum’s speech to his supporters today.  It was a good speech. He’s obviously personable and engaging and knows how to strike an emotional chord with people. He thanked his wife and mentioned all his children. But one got special attention:

“There’s another little girl who’s not here tonight. She is with a little button (ph). She’s our little angel. That’s Isabella Maria. Isabella Maria, we don’t take her out in crowds. She’s — has a disability. She has a disability that has, according to the records, the statistics, has a 1 percent chance of survival after one year. She is 31 / 2 years old. So Bella is here with us in spirit and is deeply embedded into my heart. People ask what motivates me. I say the dignity of every human life.”

This is consistent with Rick Santorum’s decision to use his daughter’s disabilities in an emotionally manipulative way during his campaigning.

I’m Not the Only One That Thinks So…

@Indecision at Comedy Central tweeted last night: “Rick Santorum: I don’t take my disabled daughter out in crowds. I just exploit her remotely.”

I read a number of commentaries on what happened last night as I prepared to blog on this, and the one that really summed everything up for me was by William Peace of the “Bad Cripple” blog. I linked to him in my last Rick Santorum piece as well. Bill and I are obviously of  the same mind about Santorum: http://badcripple.blogspot.com/2012/01/santorum-victory-in-iowa-shocked-just.html

In the post to which I linked, Bill also does a commentary on Santorum’s Thanksgiving interview about Bella that I talked about in my first post.

A commentary that I read today said that Rick Santorum doesn’t have the resources or infrastructure to run a nationwide campaign. For the sake of people with disabilities, women, and people on any kind of social assistance…let’s hope so.

Read the full transcript of Santorum’s caucus speech at http://www.washingtonpost.com/blogs/election-2012/post/santorums-iowa-caucus-speech-full-text-and-video/2012/01/04/gIQA5Q1naP_blog.html

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More on New York State Group Homes

In case anyone needs a review on what’s been happening with New York State group homes for people with developmental disabilities:

http://www.girlwiththecane.com/new_york_state group_homes/

New York State Group Homes in “The New York Times”

The latest article in the “Abused and Used” series in chronicling the abuse in New York State group homes appeared in “The New York Times” just before New Year’s. The article focuses on one of the operators: Federation of Multicultural Operators of Brooklyn. The full text of the article is here:

http://www.nytimes.com/2011/12/28/nyregion/operator-of-ny-group-homes-thrived-despite-lapses-in-care.html?_r=2&adxnnl=1&adxnnlx=1325176919- Nhrsh5AFVgD828ev1jiW6w.

The financial history and hiring practices alone of the Federation are shocking enough. But the 27 citations for failing to meet health and safety standards in Federation’s Intermediate Care Facilities (all issued between 2006 and 2010) would be, one would think enough to make New York State want to sever ties with this operator. C.E.O. Danny King, who is a retired police officer with no experience in the developmental services field before starting work with the Federation, doesn’t seem concerned, according to the “Times”.

Just an Observation

Working in the developmental services field, I’ve noticed that we’re learning as we go along.  We thought that institutionalizing people with intellectual disabilities was the best thing for them for a while. Now we don’t. Now we’re becoming aware that even the best of community residential options brings up issues around rights and safety and how people in staffed homes should be interacting with the people they support. In the almost twenty years that I’ve been involved withNew York state group homes agencies that support people with disabilities, I’ve seen ways of thinking come into favour and fall out of favour and settle in the middle and then move toward one side again.

I’m okay with working in a field where there a lot of “grey areas” and issues that need to be worked out. I don’t tend to think in absolutes, and I’ve got a lot of patience. However…

No Patience or “Grey Areas” for New York State Group Homes

I do not see grey areas, and I have no patience, when it comes to people who violate the safety of vulnerable people and of animals.  Abused kids need to go to a safe place and parents should  have to go through a long, comprehensive rehabilitation process before they get them back (if it’s ever appropriate).  People who abuse animals shouldn’t be allowed to own pets.

And a service provider that receives 27 citations within 4 years for safety violations within housing (including the Federation’s failure to investigate abuse, inadequate medical care, and medication errors), should simply not be allowed operate New York state group homes. Period.

The article says that this all started four decades ago with the state’s decision to stop institutionalizing people with disabilities and a the lack of an oversight agency that could do proper and timely inspections of the group homes that people ended up in. Forty years is a long time not to have learned as they’ve gone along with this.  Particularly as the first small public group homes became multi-million corporations like the Federation, one would think that the state would have seen the need to put proper oversight and inspection procedures in place.

It makes me wonder, again, about how much society really values people with disabilities.

I keep seeing evidence that it doesn’t, and that makes me sad.

See the archive for the “Abused and Used” series about the New York state group homes situation here:

http://www.nytimes.com/interactive/nyregion/abused-and-used-series-page.html

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Happy New Year!

Happy New Year!

It’s December 31st, and tomorrow it will be 2012.

I started this blog almost 6 months ago. I am really enjoying being a disabilities blogger, and developing relationships with other bloggers who are passionate about disability issues. I plan to keep writing for as long as people will keep reading!

Asking a Favour from My Readers

As we go into 2012, I have some questions for my readers:

  1. Is reading this blog useful for you? How so?
  2. What would you change about this blog?
  3. Are you experiencing any technical problems with the blog?
  4. Are there any specific disability-related issues that you’d like to see
    covered in the blog?

Please leave your answers as a comment to this post, or send me an email at girlwiththecane@gmail.com if you prefer to answer privately.  Answering the questions helps me to plan the blog’s future direction and to address technical problems, so thank you for taking the time to answer!

Have fun this New Year’s Eve and be safe!  Happy New Year!

New Year

 

 

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Federal judge rules that NYC needs more accessible taxis

Michael Bloomberg’s concerns that accessible taxis are uncomfortable, potentially unsafe, tooaccessible taxi expensive to have on the road, and not really what people with disabilities want will have to be shelved. Federal judge George Daniels has ruled that only having 230 accessible taxis in the fleet of 13 000 yellow taxis in New York City is in violation of the Americans with Disabilities Act. The Taxi and Limousine Commission can only issue new medallions to accessible taxis until it provides a plan for improving access for people who use wheelchairs.

http://www.unitedspinal.org/2011/12/27/judge-rules-nyc-taxis-violate-americans-with-disabilties-act/

Why Accessible Taxis?

From the linked article: “As wheelchair users, it is often assumed that we want to stay home, or that we’re satisfied with the status quo. Nothing could be farther from the truth. We are just like any other American. We want to live, work, play and worship in our communities. These things, which are so often taken for granted, are impossible without on-demand, low-cost transportation, like taxis. We’re proud to be on the leading edge of this issue and look forward to the opportunities that come with it for people with disabilities.” – Paul J. Tobin, President and CEO of United Spinal

News That Makes My Day

I’ve been following developments in this story since I started this blog. I’ve been really disgusted by the dismissive way in which Michael Bloomberg has responded to concerns about lack of accessible taxis, and at his rationale for not considering adding more accessible taxis to New York City’s fleet. He’s demonstrated, it seems to me, a real ignorance of the transportation challenges that citizens in New York (and tourists) who use wheelchairs face on a daily basis, and a disrespect in general toward people with disabilities.

As I’ve said elsewhere in this blog…London’s full fleet of taxis is accessible. There’s no reason why New York City can’t do it.

I’m looking forward to seeing more accessible taxis on my next visit to New York City

More posts on this issue:

http://www.girlwiththecane.com/accessible_cabs/

http://www.girlwiththecane.com/michael-bloomberg-accessible-cabs/

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Lost a Limb…Regrow a Limb?

Hello again!  I hope that everyone had a great Christmas and that you’re all looking forward to New Year’s!lost a limb

I spent Christmas with my family, at my sister’s house. I got lots of opportunities to play with my little niece and work on my techniques for making her smile and laugh, holding her the way she likes (so that she can see everyone), and picking her up. I’m very aware that there are many childcare that skills I that I haven’t yet mastered, but with each visit with her I feel more and more confident about my ability to look after her using one arm.

I think that’s why I’ve been a bit grumpy about a commercial that I’ve been seeing on television recently. It’s one of those commercials where people with various ailments and their doctors talk about how “We *will* find a cure for ____” (cancer, diabetes, etc.), and of course I know that these research efforts are very important. Besides my AVM (which is not supposed to be hereditary, but I’ve stories that suggest that they do seem to run in families), women on my mother’s side tend to die young from cancer, and there’s stroke and diabetes on my father’s side…it’s not exactly comforting.

Lost a Limb? We Can Cure You!

The part of the commercial that annoys me is when the young doctor comes on and says, “We *will* find a way to regrow limbs.”  Granted, I haven’t lost a limb, but I pretty much live one-handed, and I don’t feel like I miss out on a whole lot. I actually wrote about this in article right before Christmas, about how I’d once talked with a woman online who couldn’t understand why her blind date hadn’t told her before their date that he was missing a hand. I suggested that perhaps he was fine with the fact that he was missing a hand and didn’t see any need to tell her. But clearly she’d had a problem with it.

When I hear things like, “We *will* find a way to regrow limbs,” I feel the same way. I feel like it’s society saying to people who have lost a limb, “We have a problem with you being like this, so we are going to cure you,” when many of these people may not a problem at all with how they are living.  Society has the problem with the disability, not the person living with the disability.

Lost a Limb: Accessibility Woes

Not that navigating society without a limb isn’t difficult, particularly if one has to use a wheelchair. However, much of that difficulty with being in a wheelchair happens because accessibility is so slowly becoming a priority.  I can speak from experience on this one…it’s not so miserable being in a wheelchair when buildings, spaces and transportation are accessible. Again, it’s been society’s problem with people with disabilities that’s made having disabilities difficult. Thank goodness that’s changing.  It will be interesting to see whether medical science can regrow a limb by the time that all Ontario buildings have to be physically accessible (2025).

Lost a Limb, But Still OK!

I’m fine with having little function in my left arm and hand. There are some things that I obviously can’t do, but I manage. I went through a process of becoming fine with who I am with those impairments, as I imagine I would if I lost a limb.

Perhaps some people would welcome medical interventions that took away their disabilities. I’m not saying I wouldn’t try an intervention myself if it could bring back a lot of function in my arm and hand. But the blanket assumption that all people who have lost a limb want/need to be “cured” bothers me. It suggests that they’re not good enough, or can’t have productive, fulfilled lives,  the way they are right now.

And that’s simply not true.

 

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