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marianneh



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PostPosted: Sat Sep 01, 2018 10:37 pm    Post subject: ineducable Reply with quote

I think it was in the late 90s that I read in the Western Mail about a boy who had been born with cerebral palsy in the 50s. His mother wanted to get him into school.

She called the doctor out to have a look at him. The doctor dismissed him as an imbecile. ''Your son is ineducable'', he said. I can't be sure what he based his judgement on in this specific case , but it was customary to try to get kids to throw a ball into a basket. If they couldn't do it, they were held to be subnormal or lacking any mind at all.

Yes, this would catch out thalidomide victims. It ought to be obvious that you should exclude physical problems before you attribute a child's inability to perform a task to imbecility. You should exclude stubborn lack of co-operation too.

But doctors weren't aware of that. Should we attribute this to laziness on their part or a lack of clear thinking skills?

We must remember as well that children learn communication skills from the efforts of other people to communicate with them. If people don't make any effort with you, treat you like a block of wood, or wonder aloud in front of you if you have any kind of mind, this is not a great help in picking up communication skills, and certainly not conducive to developing social graces.

Yet somehow this boy did end up in the school system. There was no idea of making allowances for special needs in those days. The teacher would be wiping things off the blackboard before he had begun to copy them.

Against all the odds - I mean the obstacles put in his path by society - this guy managed to get a PhD. When he did the interview with the Western Mail, he had inoperable cancer, so I expect he is long dead.

I laughed shortly when I read in the same edition of the Western Mail a sarcastic article about a certain pop singer. The columnist insulted his backing band by calling them 'spazzes' which was what people said then when they meant 'totally gay' in present day argot. I don't think 'totally gay' is an improvement incidentally, but I mention this to show that the Western Mail had no ideological consistency.
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marianneh



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PostPosted: Mon Sep 03, 2018 9:33 am    Post subject: francesca martinez Reply with quote

The stand up comedian Francesca Martinez was diagnosed with cerebral palsy as a tiny child. The consultant also told her parents that she was mentally retarded.

They knew it wasn't true but briefly revised their opinion when she bought a Jason Donovan album aged ten. Having the slogan 'abnormal' stamped on you before you are out of nappies means that your self worth will be zero.

Francesca was quite happy at primary school. It was the reactions of other people at secondary school that brought it home to her that she was 'abnormal'. She had the confidence of a wet sock even though she was accepted for a part in 'Grange Hill.'

In recent years, Francesca has had an epiphany. She now accepts the condition. It is something she can tell stories about in her stand up routine. There is no question of not being able to communicate. Her voice has a distinctive timbre which we associate with disability. But it is not hard to understand.


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PostPosted: Tue Sep 04, 2018 10:42 am    Post subject: christy brown Reply with quote

Christy Brown was born in Dublin in 1932 to a working class family. He was one of twenty two siblings which must have been an unusually large family even by Irish standards.

He had cerebral palsy and was apparently treated like a vegetable for the first years of his life. Of course, this was not literally true. He was not sliced up and put in a salad or a soup. But it was taken for granted that he was a human vegetable.

His parents were relatively humane in keeping him at home. Thank goodness he wasn't put in a Catholic orphanage. It's not hard to guess what he would have been treated as then.

One day Christy managed to snatch a piece of chalk from his brother with his toes and draw a picture. His mother became excited and encouraged him. She had woken up to the reality that Christy had an interesting mind trapped in a useless body, and it would be productive to try to communicate with him.

The only part of Christy's body that he could control was his left foot. With his prehensile toes, he produced literature and art of high quality.

But he did sometimes become depressed when he looked in the mirror and saw what his body looked like. Why couldn't he have a hard, lithe, nimble body like his brothers?

Christy Brown wrote with a typewriter he managed with his foot. He produced an autobiography, 'My Left Foot' which was later made a film in which Daniel Day Lewis played the lead role. Then came the sequel, 'Down All the Days'.

Christy married in 1972. In 1981 he choked to death when trying to swallow food as usual. That was how much his brain could not control his body. It made ordinary functions hazardous.

I'd like to say his story is still an inspiring tale of the triumph of the human spirit. But I'm a glass half empty sort of person. Since becoming aware of Christy Brown, I've read of a Phd student with cerebral palsy who typed out his thesis with an implement attached to his forehead.

It would be good if this story could be seen as inspirational. I'm afraid it might not be as there are so many barriers to understanding. I consulted a library copy of a biography of Christy Brown.

The writer stated confidently that he was in the literal sense exceptional among sufferers of cerebral palsy in not being a vegetable. The stories above are sufficient proof that that can't be so. But it seems that people are reluctant to let go of their prejudices.

I would advise people to read Christy Brown's own works. Don't rely on the interpretations of dickheads.
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marianneh



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PostPosted: Tue Sep 04, 2018 9:24 pm    Post subject: ben elton Reply with quote

My life was rather fraught in the first few months of 1987, and I did not notice a nasty outburst from the Sun newspaper until I saw an article about it by Ben Elton in the rival paper, the Mirror. Ben's article was called 'Pride and Prejudice'.

Sun journalists had been following around Peter Phillips, the son of Princess Anne, a hazard of royal life. He was then a schoolboy, and was with a group of friends from school. The boys were naturally annoyed.

One of the boys - who may or may not have been Phillips - insulted the hacks with the words, ''You spastics!'' These days, they would have said they were 'totally gay'.

Professing to be offended, the Sun ran the insult as a headline. The charity which was then called 'The Spastics Society' turned this into a poster with the slogan: 'X million papers sold at our expense'. Within a few years, it had changed its name to Scope. The connotations of 'spastic' had become such, that it might as well have been called 'the Plonkers' Society'.

No doubt, this had something to do with doctors telling parents that their offspring with cerebral palsy were retarded although they weren't.In fact, the 80s saw a brief swing away from this trend.

Ben Elton said that, contrary to popular opinion, people with cerebral palsy were generally as intelligent as other people and sometimes more so. It was just that they were locked into useless bodies which their active minds could not control as the motors were buggered.

This was not news to me. I had read the same thing in a social studies textbook when I was at school earlier in the 80s. I agreed with him but snorted in derision anyway. He must have forgotten that the students in his sitcom, 'The Young Ones' joshed each other with remarks like: ''What are you anyway, a spazzy?''

A medical book Roger has, now says that cerebral palsy is associated with mental retardation. In a column, Dr Miriam Stoppard commented that people with cerebral palsy often have above average intelligence, but don't get the credit for it.

Now there has been a backlash. Jonathan Bryan's parents were wrongly informed by doctors that he was subnormal as late as 2006. It is presumably still going on.

Why are they addicted to doing this, although there is so much empirical evidence against it? Some doctors are not very competent or very bright.

People will think it's a miracle that they're still alive ten years after a doctor gave them six days to live. They rarely consider that the doctor was a dork.

It also gives a person in power a deep satisfying thrill to treat another person like a rather disgusting life form under the microscope, and define and judge them. This is a common weakness.

I've heard that doctors often hate disabled people because they can't cure them. They resent them and enjoy denigrating them.

It can also be a matter of public policy. After the liberation of Norway from the Nazis, Norwegian doctors were found who were prepared to say that the children fathered by Germans in the Nazi baby farm experiments were subnormal and crazy. They didn't make a distinction.

These children ended up in horrible homes where they were often kept in chains. It is awful that any doctor could so betray the Hippocratic Oath, but that's the way it goes.

A study published in the early 70s in Britain found that Irish people were subnormal and inferior. This was when the IRA had a bombing campaign on the British mainland.

The Sun was an awful paper in the 80s. It gloated when conscripted Argentinian schoolboys were torpedoed on the General Belgrano in an illegal strike by the British. Most people alive at the time will remember the headline:'Gotcha!'

It called Australian natives 'bone in the nose savages.' It said that if the British had not come and saved them from themselves, they would have killed each other off.

Considering that the Whites' genocidal campaign against Aboriginal folk didn't end until 1928, and it had been entirely successful in Tasmania, this was more than inaccurate.

The Sun also said that Neil Kinnock was ineligible to be prime minister as he was Welsh. It obviously hadn't heard of Lloyd George.

The Hillsborough relatives feel enduring bitterness because the Sun blamed the victims of the disaster. I sympathise, but I personally feel rather relaxed about the Sun.

It's still vulgar, but it has improved so much. Some years ago it had a campaign against the bullying of disabled kids in schools.

I was quite amused at the rapidity with which the Sun became enlightened once. After the boxer Frank Bruno was held to be mentally ill, the Sun had a headline on the theme:'Bloody Crazy Nutter, Bruno!' It was condemned so fast that later editions of the Sun that day ran a headline that can be paraphrased:'Poor dear Bruno!'

As for Peter Phillips and the other schoolboys; they may have been repeating what they had heard with no understanding. I remember using a term which I thought sounded quite cute but which I also knew to be insulting. I had heard it at primary school.

My adoptive sister counselled me not to use it. I asked why not. She said it was derived from a term for Down's Syndrome. I honestly was not aware that the condition existed, and still didn't understand what she objected to.

But I did get the message that it was in terrible taste, and never used it again. For once in her life at least, my sister had given me excellent advice.

I was foolishly shocked when an insane friend was having a rant. She was dissatisfied with a birthday card a friend had given her. It wasn't expensive enough.

Apparently, another friend ,who actually had learning difficulties, agreed with her. ''Ray called him a Jew!'', she ranted. ''Ray! So racist!'', I said, quite dazed.

Roger said sensibly that he had just been repeating what he had heard. It's often the same with children. I don't say there are no circumstances at all in which children should not be told off or punished for unpleasant or bigoted behaviour.

But you have to make allowances. You have to expect children to be children.
Even with uneducated adults, you might think: 'Full gently scan your Brother Man...to step aside is human'.

But I do think we have to expect better things of doctors. They have a duty of care to their patients. They have a responsibility to take them seriously and not treat them like worthless objects.


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marianneh



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PostPosted: Fri Sep 07, 2018 8:27 am    Post subject: naomi Reply with quote

Although the parents mentioned above were told by doctors that their children were subnormal or even vegetables, they didn't fall for it. They nurtured their children's very real but 'locked in' intellects.

That is why we have heard of them. If their parents had taken a negative attitude to them, they would probably have achieved nothing. It's not that fame is essential, but recognition and respect are desirable.

The time was that parents would excitedly tell doctors of incidents which proved that their children, who had severe cerebral palsy, were well aware of what was going on, and were making attempts to communicate through eye contact.

Doctors would laugh indulgently at these fond parental delusions as they saw them. They couldn't hope for support from their neighbours either. A book that covered various neurological problems had a significant anecdote. When the writer was a boy, a neighbour would put his small daughter, who had cerebral palsy, out in the sun to get the benefit of the fresh air.

He was savagely criticised by the local people, behind his back, for putting her or 'it' outside in a public place where people would have to look at her. The writer said this was a middle class area, and these were educated people. It may have been in the 50s.

Naomi Hill from North Wales was diagnosed with cerebral palsy, but she was not entirely 'locked in'. She was a bit deaf and her movements were impaired, but she had enough motor control to express her 'bright funny' personality from the outset.

She could do stuff that other kids did but 'a little more slowly'. Her father was enchanted with her. But her mother Joanne had been brought up with the usual prejudices and she still had them. Nor were the words of doctors they consulted any help in acquiring an enlightened attitude.

All they wanted to convey were gloomy and inaccurate forecasts about, 'She'll never be able to do this; she'll never be able to do that.'' Joanne could see no further than Naomi's disability. She couldn't see her personality and intellect.

She seems to have hated and resented her. She wanted to put her up for adoption, but her husband wouldn't hear of it.

So she drowned her in the bath. Flanked by policemen, Naomi's father made a public statement. The public may have heard that Naomi suffered from cerebral palsy. This was not true. She did not suffer at all. She was capable of leading a full life.

No, not directly, but she did suffer from the social prejudice around the subject.
The day after Joanne's conviction, Denise Robertson led a discussion on 'Good Morning' about whether society had any responsibility for the tragedy.

Yes, of course it has. Next question?

I'm not saying Joanne Hill should be let off or seen as a victim herself. One can only feel contempt for her.

She has as much responsibility for being disablist as a racist person has for being racist. It's an easy meme to pick up, but it's not compulsory.

Having said that, society nurtures these poisonous feelings. The time was that you would see posters in public places that challenged us.

One showed two bright eyed and alert babies. The caption said: 'One of these children has cerebral palsy. The other has full human rights'.

We don't see this kind of thing anymore. At least I don't. Is it that I go around not looking at things, or is it that our current fascistic government doesn't want the public to have any empathy with disabled people?


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marianneh



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PostPosted: Fri Sep 07, 2018 9:08 am    Post subject: peter hill and vanessa feltz Reply with quote

I heard of a mother who had two sons with severe motor problems to look after. Not only was this exhausting and dispiriting work but they were subjected to constant awful abuse from the general public.

So they moved to the Isle of Wight. Finally, the mother couldn't take the pressures any more. She poisoned herself and her sons in a car with carbon monoxide inhalation.

We can feel more sympathy for her than for Joanne Hill as she had been driven to the end of her tether.And this was before the austerity measures that are slowly killing so many now.

So what should we think of a mother who saw her daughter, who had cerebral palsy, as nothing but a thing that produced excrement, a practical nuisance for her to deal with?

It seems that her daughter was entirely locked in. Her mother had no interest in trying to communicate with her. But she conscientiously stuck to her full time job tending to her.

She also had two other daughters whom she had to get ready for gymkhanas.She was obviously over worked, and didn't get any satisfaction out of it.

It looked as if she needed a hell of a lot of respite care. She should have had carers coming in daily, and a course in looking constructively at the situation.

She didn't have these things. Nor did she even seem to want them.

What she wanted was for her daughter to be spayed at or before puberty for her own convenience. She was resigned to dealing with shit but didn't want the added bother of menstrual fluids.

This was a bit controversial. Don't people have a right to their wombs and their kidneys and the rest? People wrote in to papers to describe how they managed their own dependent children who had cerebral palsy.

One father said proudly, ''We don't discuss with her what's going to happen''. He appeared to be proud of himself, as if it would be a ridiculous thing to do.

Vanessa Feltz writes a terrible column for the Daily Express. For instance, she complained that a named annoying boy couldn't be given a good thrashing because that would not be politically correct. She also condemned the actress Wendy Craig for not having the same personality as one of the characters she played.

She thought it dishonest and a betrayal. So I shouldn't have been surprised that she had an awful take on the above controversy. She said the girl had the mental functioning of a baby, and only her mother could understand what her needs were.

I was foolishly shocked that Feltz, a graduate, should have said anything so ignorant. I didn't know in those days that doctors were often just as bad.

The whole point was that the mother had no understanding of her daughter, and didn't think there was anything there to understand. She thought she was just an unconscious shit machine.

Imagine if someone took that attitude to Stephen Hawking! That's how unenlightened it is.

Feltz had no reason and no right to say that the girl's mental functioning was that of a baby. She couldn't know that.

We can't be sure what her intellectual capacity was. No one had ever shown any interest in finding out.

I let the Express' s editor Peter Hill know what I thought. I had a condescending and insincere reply which made me realise that there is at least one person in the universe there is no point in trying to communicate with.

Since then, the Express under Peter Hill, has run government propaganda against disabled people. I was trying to influence the wrong person.

I'm afraid there is no hope that Peter Hill will ever take a rational or unprejudiced attitude to disabled people. One might almost say that he is part of Dr Goebbels' propaganda squad in these dark days.
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marianneh



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PostPosted: Sun Sep 09, 2018 8:38 am    Post subject: raj Reply with quote

Here we are under the history forum, but the prejudice we have been describing seems to have a timeless dimension. For instance, I've now read an account by a person with cerebral palsy of an encounter on a train.

She was minding her own business, reading a book. A member of the general public came up and said: ''You're just pretending to read that!'' If he had to accept that she could read, it would throw his universe out.

Often, we can only feel good about ourselves by seeing ourselves in opposition to an 'outgroup' who have to be labelled inferior. It is not just cerebral palsy of coure. As Elaine Morgan said in 'The Descent of the Child', anyone with a visibly apparent physical defect will soon make the tragic discovery that most people instinctively associate impaired mobility with imbecility.

My friend Sean has had a productive life, raised money for many organisations and finally lectured in economics. Playing rugby as a younger man buggered his joints. He now has to use a mobility scooter.

Random strangers come up and give him abuse. But even more often people speak to him as if he was a moron. Sometimes they officiously offer to do things which he can do for himself, or even painfully grab hold of him and his scooter and propel them on to the nearest pavement without bothering to say a single word to him.

Sean is acute and witty. There's no way that these people's intuition has anything to do with reality. This is referred to as the devil effect. You notice a person has one defect, and you can't think of them as a person separate from it.

Contrariwise, the angel effect automatically convinces us that if a person has a good body and is nice looking, they must have all the virtues too. Definitely, they will have a sharp mind.

It is natural to resist accepting that a person we adored for their good looks, is a petty minded fool with serious cognitive flaws, if we are presented with evidence of it. Even if we accept it with one person, we will make the same mistake again.

Medicine is supposed to be a science so it should exclude biases and intuition, but it seems that it doesn't. The TV psychiatrist Raj Persaud believes it is really true that better looking people tend to be more intelligent.

He is certainly a maverick. He is one of those heretic shrinks who does not put emotional problems down to childhood trauma, and is impatient with the idea.

I didn't think much of him as I believed he was expressing his own ideas. When he was convicted of plagiarism, I began to think a little better of him.
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marianneh



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PostPosted: Sun Sep 09, 2018 9:39 am    Post subject: min Reply with quote

There are all sorts of barriers to communication with people with cerebral palsy, and they are not all organic. Again, even if a person is disabled in a way that does not and cannot impair their speech, you can feel inhibited about talking to them because you feel uneasy in their presence.


Somebody told Moritz that he didn't know how to talk to wheelchair users. Moritz told him he should talk to them as he would to anyone else. He should talk to them as if they were human beings - because that is what they are, oddly enough.

The person was amazed. Talk to them as you would to anyone else! Because they're actually human! He had lived forty years, and such a revolutionary concept had never occurred to him.

I was standing behind a young man, a student type with a ponytail in a queue in the library in Llanelli. The young man had to use a wheelchair.

This irrelevant fact had triggered weird behaviour in the librarian. I was trying to work out what was wrong about the way she was talking to him. The words were ordinary and respectful.

Finally, it occurred to me that it was the tone. It was the high pitched 'How are we today?' tone that some adults use with toddlers. It has been called 'Motherese.'

Maybe three year olds don't mind it but older kids resent it. It is really wearing to be addressed like that. Oddly enough, doctors and health care workers are often great offenders in this respect.

A friend was in a psychiatric unit in Ebbw Vale. He had an acute episode of bipolar disorder. A gaggle of friends went to see him.
They were surprised that the staff were talking to him in Motherese. His girlfriend mentioned to a young woman on the staff that she too had been diagnosed with bipolar although it was now in remission.

To her surprise, the girl began to talk to her in a condescending sing song voice too! The Scope charity put out guidelines advising the public not to talk to disabled adults as if they were three year olds but as they would to anyone else.

The novelist Minette Waters took the advice extremely hard. She was offended by it.

To her it would be an affront to the eternal verities if the public did not have the right and the duty to wind disabled people up by talking to them in an offensively condescending way.That was how it should be so that we could fulfil all righteousness.

Her salient sentence was:'It's as if there was nothing wrong with disability'. She obviously saw the custom as a way of keeping an inferior caste in their place. The fallacy that novelists are sensitive beings crashed into dust for me. It was a pain barrier I had to go through.

Where there is no equality there can be no communication. When you are chanting at a cripple in a wheelchair, the high pitched liturgy about''And how are we today?'', you are not communicating. You are acting out a superiority complex.

And Minette, inside that terribly handicapped twisted useless body ,is a real soul and a real person who pities and despises you because you, Minette Walters, are such a contemptible dipstick.


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PostPosted: Sun Sep 09, 2018 10:05 am    Post subject: dingbattery Reply with quote

These days, doctors are not supposed to reveal something about a patient's prognosis to the person's next of kin that they haven't told the actual patient. It's all about treating patients with respect.

I don't know if this applies to things they discuss with their professional colleagues. When my children were small, health visitor were 'theoretically backward', and it may be that they still are. Often, there was a facade of respect and friendliness, but it was not necessarily lovely behind the facade as Sigmund Freud would say.

It's been noted that doctors often don't take their mentally impaired patients seriously when they try to tell them they have symptoms of a particular ailment, and this refusal to communicate properly, often leads to premature death for the patient.

No sooner was this reported in the papers, than people wrote in to say that doctors often don't take physically impaired patients seriously either, and this also often leads to premature mortality.

This social background paved the way for the terrorist organisations, Atos and Capita.If you are noticeably disabled, you do not need to have an organic speech impairment in order to find it difficult to communicate with the general public.We have also to take into account the emotional effect that your disability has on the beholder.
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PostPosted: Mon Sep 10, 2018 10:07 pm    Post subject: aide Reply with quote

If you look up cerebral palsy in a family medicine guide, you will probably read that it is a serious condition that affects both physical and mental functioning. It is definitely extremely debilitating physically.

But mentally? I think the reason you find this in medical tomes is that they're relying on the figures provided by doctors who wrongly wrote off locked in babies as retarded. The numbers are not corrected retroactively.

In real life, you hardly ever find people with cerebral palsy who really are retarded. But if you rely on medical encyclopedias, the very attempt to become educated will just mire you deeper in ignorance.

Of course, even if people are mentally backward, that is no reason to treat them badly. Unfortunately, we seem to think that once we can brand someone as a thickie, that gives us a right to ill treat them.

The motor controls are in the brain, of course, or more precisely in the cerebellum, the hind brain. This is nowhere near the frontal lobes. It is unlikely that the cerebellum has any role to play in thinking. Bigger dinosaur species had cerebella in their bums.

This is what I said to 'Debbie' who embarrassed me by telling me how fascinating she found me. I would like to know her better. Debbie was explaining how it came about that she had severe cerebral palsy. She has almost no control over her body, but luckily she can speak intelligibly although, as with Francesca Martinez, she has a distinctive timbre.

She said that it did take a while for thoughts to travel through her head. I don't know if she's wrong in thinking that it happens any more slowly than with anyone else.

So what if you can't speak intelligibly? You can use a communication aide when ringing up offices about your benefits. And then the receptionist will say, ''I'm sorry. I can't accept this machine because it's not your real voice''.

It is helpful to get away from seeing disability as a personal tragedy and use the social model of disability. The impairment may be caused by nature, but you are disabled by law, custom and society.
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PostPosted: Fri Sep 14, 2018 3:38 pm    Post subject: Reply with quote

Just read those several posts ... interesting : I had two cousins - brothers - and their parents campaigned in the 1960s to improve the lot of parents whose children had cerebral palsy ... my parents contributed a little bit to this but my mother never seemed to get the point that her brother's children were just trapped in broken bodies and as kids we would die with embarrassment at the way in which she talked to them - as if they were budgies ...

https://www.youtube.com/watch?v=buRLc2eWGPQ - I got 99 problems... palsy is just one | Maysoon Zayid

https://www.youtube.com/watch?v=FM5-DGprLpc - The world is broken | Maysoon Zayid

https://www.youtube.com/watch?v=tnGAZiqa3Ek - Being happy is a political act | Francesca Martinez

https://www.youtube.com/watch?v=MHqFQ8Q5KmM - Josh Blue - Comedian with Cerebral Palsy

... Could you text me when you post so that I know that there is something to look for - please ?
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