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Disability Pride Month: Motor neurone disease diagnosis spurred us on to get married
Disability Pride Month: Motor neurone disease diagnosis spurred us on to get married
Getting married wasn’t “on the books” for London couple Craig Pollard and Alex Herd for a long time. But that changed when Alex got diagnosed with motor neurone disease (MND) in 2021, aged 30. “We decided to get married as a bit of a consequence of Alex’s diagnosis,” explains Pollard, 35. “It wasn’t something that was on the books for us before, especially as being gay, marriage wasn’t available to us when we were younger, so wasn’t necessarily something we’d aspired to. “But then thinking about the legacy we wanted and how much time we had together, we saw it as a good way of bringing our families together and celebrating something really positive in our life.” MND affects nerves in the brain and spinal cord which send signals to muscles. There is currently no cure, so as muscle loss gets worse over time – affecting movement, speech, swallowing and breathing – it eventually leads to death. It’s uncommon and mostly affects people in their 60s and 70s, although as Herd’s diagnosis shows, MND can occur in younger adults too. The charity Challenging MND, which helps people with MND, has the ‘opportunity to create amazing memories’, funded the couple’s big day last year – a fabulous festival-inspired party officiated by drag queen Just May from RuPaul’s Drag Race UK Season 4. They had already been together for a decade, so the wedding was a “celebration of all the things we’ve enjoyed together over the last 10 years”, Pollard notes (plus “lots of glitter and sparkle – it was perfect”). It was also the last time Herd went a full day without using a wheelchair. “So it was the very last moment we possibly could have done that,” adds Herd, now 32. “And we can look back at that as a really special day.” He first started noticing symptoms in early 2021 – muscle twitching then weakness in his hands and arms, before his legs became increasingly affected. Herd used a manual wheelchair for a while but recently switched to an electric one. “That’s changed my life quite a lot,” says Herd. “While I was in the manual wheelchair and Craig was pushing around, I sort of felt like I didn’t really exist anymore, because everyone would interact with him, and I wasn’t responsible for where I was. But now I’m in control of my movement, I feel like I’m more interacting with people myself.” The diagnosis has been challenging on multiple levels, individually and as a couple. MND doesn’t present with exactly the same patterns for everyone – so there is no guidebook as such, and navigating support services relies on a lot of self-advocating. Things such as specialist physiotherapy and occupational therapy can be helpful, along with home adaptations. “Having MND, you have to get used to things changing,” says Herd. “I mean, I can’t necessarily relate at this point to someone who’s been in their wheelchair for their whole life, but because things keep changing, you can’t really get used to it properly. So it’s very difficult for me to kind of keep hold of my identity.” In a recent survey, Challenging MND found 63% of people living with the MND had felt marginalised or ‘othered’ because of their condition, while 51% felt others see MND as their identity. In addition, 80% said they felt isolated, and 69% worry about being a burden to their family. Feeling ‘othered’ is something Alex found himself thinking about while attending Pride London recently. “It’s almost more like something I’m doing, than something other people are doing – because I’m seeing people doing what I would’ve been doing a year ago, it’s still fairly fresh for me, so I’m still comparing the before and after,” he reflects. “At Pride, lots of people get to see themselves represented in the crowds, and that’s nice. But then I realised how much more of a minority people in wheelchairs are. It made us realise how different our situation is now, our priorities and expectations in general.” Music has been an important way for him to stay connected with his identity. “I’ve been making music for over 10 years, so it’s nice I’m still able to do that. I think as much as possible, people in a situation like this need to try and keep doing the things that made them happy before,” he says. While he can no longer play his guitar, Herd made voice recordings to use an instrument and creates tracks on his computer, using foot pedals as he can no longer click the mouse. Since his diagnosis, he’s actually been finishing a lot more songs. “I have less distractions now!” Herd quips. “But using music as a communication tool, that’s definitely become more important to me.” Challenging MND also supported the couple with a trip to Eurovision – “which was really touching and we made great memories”, says Pollard. They’re also grateful to support from the Motor Neurone Disease Association, who provides a local area liaison, and their local St Christopher’s Hospice has been “really helpful”. These things make a huge difference. “Something I’m very conscious of as an able-bodied person is watching Alex have to come to terms with first of all being disabled, then being visibly disabled, and then being disabled in public – there’s been a lot of different elements we’ve had to really tackle,” Pollard reflects, citing navigating public transport as one of the main everyday challenges. There’s an emotional toll too. “My energy levels are a lot lower than they used to be, and my capacity for stress. I feel like I already have this much higher baseline of anxiety about various things, so it feels much easier to become overwhelmed,” says Herd. “I think the only thing we can really do is just try and focus on the next thing, rather than worrying about everything.” As members of the LGBTQ+ community, there are sometimes other nuances to their experiences. They’ve noticed LGBTQ+ events are doing well with accessibility, but representation can be a more subtle matter. “There’s definitely an element of the community who are very mindful of others and very empathetic, which I think has been where I’ve learned a lot about different people’s experiences in my life,” says Pollard. “But when it comes to the overall society of the community, I think there’s still a large proportion of it based on image, based around being cool and trendy. So it’s quite easy for people with accessible requirements to be kind of ignored in that space.” As for their experiences in public, Craig says: “We have struggled to feel like we can take up space. First of all being LGBT, we often don’t feel that safe in certain spaces, public transport we’ve had trouble on once or twice in the past, so you’re always a bit uneasy. With moving into being more visibly disabled and needing more accessible requirements, that’s something we’ve to discuss and manage.” Thanks to Challenging MND, the couple are banking up the joyful times. “They offered to support our wedding, which was really special, and without them we probably wouldn’t have had it,” says Pollard. “That isn’t just a memory for us, it’s a memory for our families and friends too. It was really special.” Challenging MND aims to support and empower those living with MND to create lasting memories for themselves and their families. To date they’ve granted in excess of £1.1million and supported over 100 families.
2023-07-06 16:22
Airbnb Is Fundamentally Broken, Its CEO Says. He Plans to Fix It.
Airbnb Is Fundamentally Broken, Its CEO Says. He Plans to Fix It.
Airbnb Inc. CEO Brian Chesky hasn’t had an easy 2023. First there was the “Airbnbust” frenzy in March,
2023-10-02 16:24
Michael Chiarello, Food Network chef, dead at 61
Michael Chiarello, Food Network chef, dead at 61
Michael Chiarello, a prominent chef known for appearing on "Easy Entertaining with Michael Chiarello" and "Top Chef," has died. He was 61.
2023-10-09 08:24
China urges deeper trade ties with Russia despite Western rebuke
China urges deeper trade ties with Russia despite Western rebuke
BEIJING China on Tuesday urged increased cross-border connectivity with Russia and deeper mutual trade and investment cooperation, as
2023-09-20 08:55
The Best Fourth Of July Home & Furniture Sales You Can Shop Now
The Best Fourth Of July Home & Furniture Sales You Can Shop Now
Forget the fireworks, we're looking forward to Fourth of July furniture sales this year...and the year after that...and the year after that. Of course, fashion deals are great and beauty discounts are definitely worth carting — but for a real holiday weekend rush, why not score some big-ticket items with itty-bitty price tags?
2023-06-28 04:26
'Quordle' today: Here are the answers and hints for July 4
'Quordle' today: Here are the answers and hints for July 4
If Quordle is a little too challenging today, you've come to the right place for
2023-07-04 11:22
Trash Cans Make Techy Comeback in Japan as Tourists Flood Cities
Trash Cans Make Techy Comeback in Japan as Tourists Flood Cities
Japan has long managed to keep its streets spotless despite having no trash cans in sight, but cities
2023-11-18 08:49
Asia Shares Look Mixed as Bonds Sink, Dollar Rises: Markets Wrap
Asia Shares Look Mixed as Bonds Sink, Dollar Rises: Markets Wrap
Asian shares are poised for a subdued opening on Tuesday as concerns about China’s property sector re-emerge. Wall
2023-09-26 07:23
From tailoring to florals: 5 key fashion trends to know for autumn/winter
From tailoring to florals: 5 key fashion trends to know for autumn/winter
Ready for a wardrobe refresh? Time to phase out your summer staples, rethink your separates and swoon over the spectrum of styles walking down the catwalk. Naturally, most statement pieces will be toned down and reimagined by the time you’re rustling through the rails… but as every style follower knows, they need to be on your radar to sneak a front row seat. Here are five stand-out trends to get in the groove… 1. Bold tailoring This season it’s all about the sharp shoulder. From Saint Laurent to Christian Dior, to David Koma and Dolce & Gabbana, the tailored jacket is a key silhouette. Teamed with a crisp white shirt and sharp tie, pinstripes are also on point. Call it power dressing if you like, the 80s padded shoulder may not be cutting-edge, but suiting signals confidence – and you can always wear yours with a simple white T-shirt. Skinny belts and black court shoes were also seen throughout – think workwear with a sophisticated spin. 2. Fire engine red There’s no rhyme or reason why designers adore red (as do we), it just works. The colour of substance, romance and passion, the hottest ticket in town strutted its stuff down the catwalk at Stella McCartney, Fendi, Bottega Veneta and Valentino, to name a few. Showstopping from top to toe with all eyes on you, a strong red also solves the fashion dilemma of what to wear when you fancy more than a flick of colour for a red carpet look – as illustrated by Ukrainian designer Frolov. Red also sits well with classics… it’s no secret a red handbag is a workhorse wardrobe staple when it’s teamed with neutral tones – and takes you from lunch al desko to date night. 3. Winter Florals Sure to be a huge hit, who can resist the allure of fabulous florals when the leaves start to fall – and you want to look blooming marvellous whatever the weather? Florals featured foremost at Balenciaga, Chanel, Christian Dior and Emilia Wickstead – but even Jil Sander, noted for her understated mannish clothing, couldn’t resist the allure of charming floral prints. Best of all, whether your chosen bouquet is a loosely-fitted trouser suit or printed pleated dress, flowers were flourishing in all their forms… and it’s an easy look to recreate. An added bonus, you can’t go wrong with floral accessories, such as a floral print scarf, as seen at Burberry, teamed with wide-leg trousers as a nod to beautiful buds. 4. Dark drama Black is back, big-time. Proving the undisputed colour of AW23, you can never have too much monochrome, ebony or jet black to don and drape yourself in fashion’s darkest – and most desired shade. For day-to-night dressing, tailored, long black coats (LBC) were central at Dolce & Gabbana, Prada and Victoria Beckham – and an investment you can really bank on with its timeless appeal. And then you need to find the perfect long black dress (LBD) or bodysuit. From peak corset all-in-ones and dresses at Alexander McQueen; to sequinned silk chiffon capes at Michael Kors for a ‘liquid look’, to team with trousers, this is black at its sexiest best. 5. Metallics Torn between metallic chains and liquid metal, steely, silvery tones in futuristic form were seen on the runway at Balmain and Paco Rabanne. Most wanted, we’re a sucker for Paco Rabanne’s Silver Mesh Bomber Jacket – and can’t wait for a fast fashion version. One to wear with denim jeans and silver sphere bag with crystals à la Rabanne. Pre-Fall 23 Collection Along with her sculpted shapes, Roksanda also rocked the runway with floor length fluids and high-shine fabrics… And who doesn’t love to razzle-dazzle when darkness falls… and it’s your time to shine and go for all out glam in the run up to party season! Read More Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live Cue the damson decor trend to snug up your space Sex Education: What is it like to be a real-life Jean Milburn? King Charles to address French senate in historic first
2023-09-21 15:20
Bride shocks wedding guests with McDonald’s catering
Bride shocks wedding guests with McDonald’s catering
One bride wanted to make sure her wedding guests were lovin’ the special day. Stephanie Arielle, known for her wedding content on TikTok, recently posted about her decision to have McDonald’s cater her wedding for the low price of just over $200. “We had 75 guests total and we ordered 100 chicken McNuggets, 25 junior chickens [a grilled chicken burger], 25 cheeseburgers and 50 small fries,” she said in an interview with Newsweek. Text across the screen of her video explains that the McDonald’s was only a midnight snack and not the actual food for the ceremony. “If you want a midnight snack at your wedding but don’t wanna get your guests off the dance floor, you’re gonna wanna hear this tip,” she said in her TikTok. “The best way to keep your guests dancing all night long is to either pass your midnight snack or put the table right at the edge of the dance floor. We did this with McDonald’s and it worked amazing. Highly recommend.” Many people loved the idea and joked in the comments section about how they wanted to do something similar at their own wedding. Others, however, assumed the McDonald’s would be cold by the time it arrived and commented on how cold fast food never tastes good. “Never cold McDonald’s,” one viewer commented, with another sarcastically writing, “Yum cold McDonald’s.” @stephanie.arielle McDonalds as a midnight snack is always a great idea ??? #midnightsnack #mcdonaldswedding #weddingtips ♬ greedy - Tate McRae One commenter wanted to know how Arielle managed to get such a large order to her wedding venue. “Okay but seriously what were the logistics of this? Did you Uber Eats? Did someone go get them from your wedding party? I want to do this.” Arielle responded in a video explaining the planning process. “We started off by researching McDonalds’ that were close by to our venue because we wanted the food to arrive hot,” she began her TikTok. @stephanie.arielle Replying to @Eli #greenscreen #greenscreenvideo the logistics of our mcdonalds late night snack ??? #midnightsnack #mcdonaldswedding #weddingtips ♬ greedy - Tate McRae “We ended up finding one that was less than 10 minutes away, so we went in to speak to the manager about a month before our wedding. We told him exactly what we wanted.” This included making sure the food arrived at 11 pm. The manager responded by saying he would make sure to have enough staff that day and would deliver the food personally himself. He put the food in smaller packages than normal to make them easier to grab and go on the dance floor. The couple then confirmed with the fast food restaurant the week before the wedding and put a serving table right next to the dance floor. Since first being posted on 6 October, the TikTok has received over three million views. Many people commented on the follow-up video too, mentioning how impressed they were with both the idea itself and how nice the restaurant’s manager was. “I don’t drink but having McDonald’s fries while drunk sounds incredible,” one commenter wrote. “He did amazing! I hope you tipped him well,” another commenter pointed out. “When we were looking for a late night snack, we immediately thought of McDonald’s," Arielle said to Newsweek. “It’s our favorite guilty pleasure food and we know that everyone loves a burger or some nuggets once they’ve had a few drinks.” The Independent has reached out to Arielle for comment. Read More Bride and groom go viral for breaking wedding tradition - and their followers love it Groom expertly handles his bride’s beauty emergency on their wedding day Bride who lost sight as a teenager has wedding guests ‘live a moment in her shoes’ with blindfolds Bride and groom go viral for breaking wedding tradition Groom expertly handles his bride’s beauty emergency on their wedding day Restaurants are charging ‘vomit fee’ at bottomless brunch
2023-10-18 03:18
Fears over Uganda's anti-gay law threaten HIV progress
Fears over Uganda's anti-gay law threaten HIV progress
At a mostly empty clinic catering to HIV patients, staff monitor CCTV footage for potential spies, reflecting the fear among Ugandan health workers following the...
2023-10-09 18:16
15 Creative Examples of Fast Food Packaging (Both Real and Imagined)
15 Creative Examples of Fast Food Packaging (Both Real and Imagined)
Sometimes the packaging is even better than the food.
2023-09-10 22:54